i just saw this on my friend's blog and found it so amazingly true that i wanted to share it will all of my friends. everyone spends alot of time thinking and talking about what cancer does to you, but not a lot of time talking about what it doesn't have to do to you. as i enter my last week of treatment i know how important it is to recognize these things.
Cancer is so limited
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit
thanks kristyn!
Monday, October 4, 2010
Sunday, September 26, 2010
oops!
so it's been quite a while since i last posted, and for that, i am sorry. i guess after i last posted was when i really started to lose it with being home all the time. i was going really stir crazy and made a decision that i am now very happy with. i returned to work!
it was all just becoming too much for me to be home everyday. especially on the days when i felt great, which other than the immediate days surrounding treatments, was more often than not. i think it was important for me to take the time off at the beginning of treatment, and even for a month or two after, just to deal with this all, to take it all in and figure out how my life was going to adjust to this unexpected turn. and once i did that, and got used to the routine of every other week feeling crappy for a few days, i needed out!!
i noticed myself getting a little more testier (than usual) with people, and just getting annoyed. and also i felt myself getting dumb. this could be due to the 18 hours of tv a day i was watching. i lost my attention span, i couldnt concentrate on a book for more than a chapter or two, and even magazines were becoming a chore to go through. so after talking with my doctors, and thinking about it alot, i decided it was time to get back to reality.
i started out slow, only coming in for a few hours every few days, just getting caught up on stuff like emails and whats been going on in the four months (!!!!) that i had been gone. this also allowed people to get used to seeing me again. i think when you dont see someone for a while and you hear they are going through something like this you can only assume when you see them again they will be sickly, pale, and skinny. well, for me only one of those attributes is true, and that's the pale part, oh and i guess the sickly part. people are always shocked when they see me "you look great!" well, i feel great! if you are seeing me, that means i feel great, if i dont feel great, i'm on the couch with real housewives on the tv. and as for the skinniness, i must say i am a medical marvel and have managed to GAIN weight during treatment. not alot, but enough that i think it will be a shock to my system when i dont allow myself to 'eat whatever i want, whenever i want' as my doctor instructed.
i knew it would take a few weeks of catching up with people, letting them know i was easing myself back in, that i am still doing ok even during treatment, i was ready for that adjustment. so then after the completion of cycle 5a i was back at it at cramer. working full days, other than my treatment days (every other thursday) and the friday and monday following. and i'm loving it. you dont realize how much you need the social aspect of work in your life. you need to be around people, you need to hear what is going on in other people's lives, projects at work, to know there is a life outside of your own. i was allowing myself to get too involved with my illness, and that wasnt good for anyone. including my darling fiance chris who had to put up with me being my not so pleasant self (love you chris!)
so again i am grateful to not only work for a company that kind of just let me decide when i was ready to come back, but to work with the people that have made it so easy to come back!
it was all just becoming too much for me to be home everyday. especially on the days when i felt great, which other than the immediate days surrounding treatments, was more often than not. i think it was important for me to take the time off at the beginning of treatment, and even for a month or two after, just to deal with this all, to take it all in and figure out how my life was going to adjust to this unexpected turn. and once i did that, and got used to the routine of every other week feeling crappy for a few days, i needed out!!
i noticed myself getting a little more testier (than usual) with people, and just getting annoyed. and also i felt myself getting dumb. this could be due to the 18 hours of tv a day i was watching. i lost my attention span, i couldnt concentrate on a book for more than a chapter or two, and even magazines were becoming a chore to go through. so after talking with my doctors, and thinking about it alot, i decided it was time to get back to reality.
i started out slow, only coming in for a few hours every few days, just getting caught up on stuff like emails and whats been going on in the four months (!!!!) that i had been gone. this also allowed people to get used to seeing me again. i think when you dont see someone for a while and you hear they are going through something like this you can only assume when you see them again they will be sickly, pale, and skinny. well, for me only one of those attributes is true, and that's the pale part, oh and i guess the sickly part. people are always shocked when they see me "you look great!" well, i feel great! if you are seeing me, that means i feel great, if i dont feel great, i'm on the couch with real housewives on the tv. and as for the skinniness, i must say i am a medical marvel and have managed to GAIN weight during treatment. not alot, but enough that i think it will be a shock to my system when i dont allow myself to 'eat whatever i want, whenever i want' as my doctor instructed.
i knew it would take a few weeks of catching up with people, letting them know i was easing myself back in, that i am still doing ok even during treatment, i was ready for that adjustment. so then after the completion of cycle 5a i was back at it at cramer. working full days, other than my treatment days (every other thursday) and the friday and monday following. and i'm loving it. you dont realize how much you need the social aspect of work in your life. you need to be around people, you need to hear what is going on in other people's lives, projects at work, to know there is a life outside of your own. i was allowing myself to get too involved with my illness, and that wasnt good for anyone. including my darling fiance chris who had to put up with me being my not so pleasant self (love you chris!)
so again i am grateful to not only work for a company that kind of just let me decide when i was ready to come back, but to work with the people that have made it so easy to come back!
Friday, August 13, 2010
it's already august!
so i dont really have a good excuse as to why i havent written in almost a month. i guess my treatment is getting so routine that i didnt really want to bore everyone with the same old same old. yesterday marked the end of cycle four, which means two more cycles and then i'm donzo! four more visits to dana farber for treatment, the end is really in sight now. before the last treatment i complained of some breathing troubles which is a common side effect of one of the chemo drugs i am on, Bleo, so i went through a series of lung tests and my doctor decided to drop the Bleo from my treatment schedule completely. this is a common practice during treatment and they are currently conducting studies on whether or not to drop the Bleo from the chemo series completely from the start but there isnt enough evidence yet to support it. so i should expect the heaviness i've been experiencing in my chest to subside over the next few weeks.
plus over the past few weeks i have been dealing on more of an emotional level with my disease, finding coping mechanisms to deal with not only getting through this, but to learn how to move on once this is over. i was reading a fellow cancer survivor's blog and she said something very interesting, that really hit home. she is about 3 months out of treatment and she said how bizarre it is to now be able to plan her life in more than two week intervals. that's really what i'm doing right now and it's frustrating. it's annoying to have one good weekend and one bad weekend, it's annoying to have to schedule your life like that.
but then yesterday chris and i had the opportunity to sit next to a husband and wife that we ended up striking up a conversation with. he has been dealing with a brain tumor for more than two years, he has had surgeries and they have tried multiple types of chemotherapy and nothing has worked. he is 38 years old with three kids. talking to him really made me feel two things, one kind of bad that i was so happy to be there yesterday talking to the nurses and telling them that this was the end of cycle four and i will be done in october. this guy has no idea when he's going to be done, or if ever, i cant imagine that frustration. but it also made me feel grateful, i'm happy i had the opportunity to sit next to him and hear his story, i know now after all i have been through not to take one day for granted, but he made it seem more real one such a different level.
plus over the past few weeks i have been dealing on more of an emotional level with my disease, finding coping mechanisms to deal with not only getting through this, but to learn how to move on once this is over. i was reading a fellow cancer survivor's blog and she said something very interesting, that really hit home. she is about 3 months out of treatment and she said how bizarre it is to now be able to plan her life in more than two week intervals. that's really what i'm doing right now and it's frustrating. it's annoying to have one good weekend and one bad weekend, it's annoying to have to schedule your life like that.
but then yesterday chris and i had the opportunity to sit next to a husband and wife that we ended up striking up a conversation with. he has been dealing with a brain tumor for more than two years, he has had surgeries and they have tried multiple types of chemotherapy and nothing has worked. he is 38 years old with three kids. talking to him really made me feel two things, one kind of bad that i was so happy to be there yesterday talking to the nurses and telling them that this was the end of cycle four and i will be done in october. this guy has no idea when he's going to be done, or if ever, i cant imagine that frustration. but it also made me feel grateful, i'm happy i had the opportunity to sit next to him and hear his story, i know now after all i have been through not to take one day for granted, but he made it seem more real one such a different level.
Sunday, July 18, 2010
cycle three...complete!
so thursday marked the end of cycle three and also the halfway point of my treatment! yaaaaay!
although it is frustrating to know i still have another three cycles, which means six more visits to dana farber i am trying to look at from a glass-half-full perspective. chris and i have created a countdown calendar (82 days), and we've decided to start planning for things past october.
this past thursday i met my new doctor on her fellowship, dr. sarah. (she prefers to be called that as most people just butcher her last name) when i met with her she asked me about myself, asked about chris, and our wedding plans as my previous fellow, dr bhatt had told her about us. i had a little bit of a breakdown telling her about chris, our wedding, and the frustration of not knowing what the future holds and being scared to plan anything. she sat back and said something that really meant alot 'at some point you're going to have to start planning' and she's right, if i dont start looking forward to things, and thinking about our wedding, this stage in my life will never end, i will always be waiting for that other shoe to drop, waiting for this to come back and throw a wrench in all my plans again. and i have to keep the mind set that this is not coming back, i'm going to finish treatment on october 7th, and bid adieu to cancer. and chris and i are going to get married, we will have a house, we will get a puppy, we will go on trips and someday have babies.
i have discovered it is way too easy to wallow in the misery of all of this, to let this thing beat you down, to let the boredom get to you. i have to make a conscious effort to stay positive and to keep moving forward and that's what i'm doing, i dont see another option. well i do, but depressed and sad isnt a good look on anyone, especially me.
although it is frustrating to know i still have another three cycles, which means six more visits to dana farber i am trying to look at from a glass-half-full perspective. chris and i have created a countdown calendar (82 days), and we've decided to start planning for things past october.
this past thursday i met my new doctor on her fellowship, dr. sarah. (she prefers to be called that as most people just butcher her last name) when i met with her she asked me about myself, asked about chris, and our wedding plans as my previous fellow, dr bhatt had told her about us. i had a little bit of a breakdown telling her about chris, our wedding, and the frustration of not knowing what the future holds and being scared to plan anything. she sat back and said something that really meant alot 'at some point you're going to have to start planning' and she's right, if i dont start looking forward to things, and thinking about our wedding, this stage in my life will never end, i will always be waiting for that other shoe to drop, waiting for this to come back and throw a wrench in all my plans again. and i have to keep the mind set that this is not coming back, i'm going to finish treatment on october 7th, and bid adieu to cancer. and chris and i are going to get married, we will have a house, we will get a puppy, we will go on trips and someday have babies.
i have discovered it is way too easy to wallow in the misery of all of this, to let this thing beat you down, to let the boredom get to you. i have to make a conscious effort to stay positive and to keep moving forward and that's what i'm doing, i dont see another option. well i do, but depressed and sad isnt a good look on anyone, especially me.
Sunday, July 4, 2010
there is an end in sight
so i know my loyal followers must be on pins and needles waiting for the results of my pet scan from thursday. well let me put all your fears to rest...the pet scan looked great. it showed improvement and shrinking of all the cancer that was there before. after reviewing the scan my oncologist informed me that she recomends going for the full six cycles of chemo and then do another pet scan a month after that is completed. so right now my last round of chemo will be october 7th.
now i am trying my best to be positive here and think, this is a good thing, the cancer is going away, blah blah blah. but it's just really frustrating to know i have to go back and do this 7 more times (each cycle is two visits so i will need a total of 12, and i have completed 5) and feel like this for another 3 months. it is good we have an end in sight, i think i gave myself a false sense of hope by thinking maybe i could do 4 cycles and radiation. although i know radiation can cause more complications later on, it's a quicker fix. but as everyone keeps telling me, it's better to be safe than sorry.
i'm just REALLY over this whole cancer thing.
now i am trying my best to be positive here and think, this is a good thing, the cancer is going away, blah blah blah. but it's just really frustrating to know i have to go back and do this 7 more times (each cycle is two visits so i will need a total of 12, and i have completed 5) and feel like this for another 3 months. it is good we have an end in sight, i think i gave myself a false sense of hope by thinking maybe i could do 4 cycles and radiation. although i know radiation can cause more complications later on, it's a quicker fix. but as everyone keeps telling me, it's better to be safe than sorry.
i'm just REALLY over this whole cancer thing.
Tuesday, June 22, 2010
chemo round 2...complete!
so last week marked the end of round two!
this time around was better than last time, the doctor gave me a new anti nausea drug that actually i got through my IV before the treatment started, which meant i didnt have to track a bunch of pills all weekend. i think this actually worked great, i had a good weekend, i had more energy than usual, i still had low energy and slight nausea, but all in all it was a better weekend, so thats a good thing. i think i kind of paid for it though on monday, i felt really sick all day and had to revert back to taking some of the pills again. i think the new med just wore off and my body was like in shock about it.
so next week, july 1st marks the beginning of round 3, it's going to be a really long day but hopefully it will be worth it. i go for my PET scan in the morning (warning: i will be radioactive) but since i am having the test done right at dana farber, they will be able to read the results in real time, so i have an appointment with my oncologist, dr. lacassce at noon to review the results and discuss the next steps. hopefully i will have a more firm grasp on when this will all be over after next week. i asked dr. bhatt what they hope to see in the scan, and she said it will show one of three things, either the cancer has, improved, remained stable, or gotten worse. the chances that it has gotten worse are rare, and all signs point to it has gotten better. (i havent have anymore signs of lumps, etc) so once we know the results we will discuss the options. whether to continue with chemo, start radiation, a combination or what.
either way i am scheduled to complete round 3, and since i am taking everything one day at a time, that's all i know right now!
this time around was better than last time, the doctor gave me a new anti nausea drug that actually i got through my IV before the treatment started, which meant i didnt have to track a bunch of pills all weekend. i think this actually worked great, i had a good weekend, i had more energy than usual, i still had low energy and slight nausea, but all in all it was a better weekend, so thats a good thing. i think i kind of paid for it though on monday, i felt really sick all day and had to revert back to taking some of the pills again. i think the new med just wore off and my body was like in shock about it.
so next week, july 1st marks the beginning of round 3, it's going to be a really long day but hopefully it will be worth it. i go for my PET scan in the morning (warning: i will be radioactive) but since i am having the test done right at dana farber, they will be able to read the results in real time, so i have an appointment with my oncologist, dr. lacassce at noon to review the results and discuss the next steps. hopefully i will have a more firm grasp on when this will all be over after next week. i asked dr. bhatt what they hope to see in the scan, and she said it will show one of three things, either the cancer has, improved, remained stable, or gotten worse. the chances that it has gotten worse are rare, and all signs point to it has gotten better. (i havent have anymore signs of lumps, etc) so once we know the results we will discuss the options. whether to continue with chemo, start radiation, a combination or what.
either way i am scheduled to complete round 3, and since i am taking everything one day at a time, that's all i know right now!
Sunday, June 20, 2010
stupid side effects volume 1
so i have decided to start a new feature on the 'so this is what it's like' blog called "stupid side effects". this will be dedicated to all these ridiculous side effects as a result of chemotherapy that i keep experiencing and some of them are just too good not to share.
so what to begin with? i actually started writing these all down the other night and i already have like 12. but today i will start with one that is bothering me right at the moment.
a constant gross taste in my mouth.
really? the nausea isnt bad enough? i now have to deal with a gross stale taste in my mouth at all times? just lovely. so as if finding foods to eat and enjoy wasnt hard enough, i am now competing with this.
thankfully this is a temporary side effect and should go away in a few days, but while it's here, look out people.
so what to begin with? i actually started writing these all down the other night and i already have like 12. but today i will start with one that is bothering me right at the moment.
a constant gross taste in my mouth.
really? the nausea isnt bad enough? i now have to deal with a gross stale taste in my mouth at all times? just lovely. so as if finding foods to eat and enjoy wasnt hard enough, i am now competing with this.
thankfully this is a temporary side effect and should go away in a few days, but while it's here, look out people.
Monday, June 14, 2010
well, it happened
so i know i have disappointed my fans by not writing in a little while, and first, let me apologize. i guess the truth of the matter is this last round was not the best and i really didnt want to depress everyone with my feelings. but then my friend grete said 'give the people what they want, they dont need a postive attitude all the time' and she's right. i started writing this blog to inform family and friends what i was going through, and it might not always be sunshine and rainbows.
so this past round of chemo just started off bad, i started the day out with a fever, and just not feeling good. my fever ended up going down by the time the infusions started, but i just in general wasnt feeling 100% and i think that really effected this whole round. it was a long day, we got there at 10am and didnt leave until almost 4. a long day of sitting and feeling like crap and not being at your home base is enough to make anyone cranky. there was a positive outcome to this round though, my doctor informed me that they would be doing a pet scan before the next cycle, which will be july 1st. so that is one round earlier than initially thought. i doubt it has anything to do with how things are going, because the scan will be the only indicator of that, but having the scan done and the results earlier is great, so we have a better idea of how much longer i have to go through this for.
so the first cycle my schedule would go as follows: go in for treatment on thursday, feel crappy thursday night through monday, not feel super great on monday and tuesday, but at least wouldnt need anti-nausea meds, just felt sleepy and lacked energy. this round i felt like crap from the thursday i went in for treatment until the following saturday. this did not put me in a good place. i had moments of feeling okay, but i think alot of it was me forcing myself to try and feel better, to try and trick my head to say oh no, this is day i'm supposed to be feeling good, so i will feel good. the power of positive thinking, i was hoping, which worked for a few days.
i think emotionally i did not do well this round at all. i went to visit my work to see some friends and talk to them about the fact that i dont think i can return to work just yet because of the uncertainty of my treatment right now. this visit was good and bad. it was good because it was fun to see people, and everyone was so supportive and all that, but it also depressed me because it was like i was getting a glimpse of my 'normal life' where i worked all day, talked to lots of people, went from meeting to meeting, answered questions and felt like a contributing member of society. but the reality is right now, i sit at home, and for half the time really just feel like crap and sit and watch tv. i know for most this would be a dream come true to get a break like this, which it is nice, and it's a bigger bonus that it's summer and not winter, but for me it's hard. it's hard when chris comes home and where we used to sit and talk about our days over dinner, all i have to say is "i really hate when regis is on vacation and kelly has to fake it with a guest host"
it doesnt help that i have always been a person that can escape into tv land when i'm feeling down, it's always been a friend to me. but this round i kind got sick of it, i got sick of reading, i just got sick of it all. and then it happened. it all hit me. this whole situation hit me like a bus going 80. so many people have said to me, you're being so positive, that's great, keep that up, even my oncologist who deals with breaking the news of people having cancer everyday said 'you're being really calm right now, are you okay?" and just this weekend i allowed myself not to be ok. this situation sucks. this isnt some glorified summer vacation. i have cancer and i am going through chemotherapy. i feel sick alot of the time. i cant even walk down the street without getting winded some days. i was supposed to be getting married in a few months, i should be shopping for bridal shower dresses and outfits for my honeymoon. we dont even know when we are going to be able to get married and it sucks, everything was going so perfectly in our lives and this had to happen and i just dont get it, it's not fair.
but thats what i have to allow myself, it's not all sunshine and rainbows, i have to allow myself these moments of 'this sucks' because otherwise i cant balance it with the positivity of taking this all one day at a time, and knowing that i will someday look back on this and it will seem like a small blip on the radar. i was having a hard time accepting that i would one day be a cancer survivor because that means at one point i had to be a victim. i dont in general like to 'play the victim' but i think part of this illness is accepting what is going on, not just try and ignore it and hope it goes away. i think it's part of surviving it.
so this past round of chemo just started off bad, i started the day out with a fever, and just not feeling good. my fever ended up going down by the time the infusions started, but i just in general wasnt feeling 100% and i think that really effected this whole round. it was a long day, we got there at 10am and didnt leave until almost 4. a long day of sitting and feeling like crap and not being at your home base is enough to make anyone cranky. there was a positive outcome to this round though, my doctor informed me that they would be doing a pet scan before the next cycle, which will be july 1st. so that is one round earlier than initially thought. i doubt it has anything to do with how things are going, because the scan will be the only indicator of that, but having the scan done and the results earlier is great, so we have a better idea of how much longer i have to go through this for.
so the first cycle my schedule would go as follows: go in for treatment on thursday, feel crappy thursday night through monday, not feel super great on monday and tuesday, but at least wouldnt need anti-nausea meds, just felt sleepy and lacked energy. this round i felt like crap from the thursday i went in for treatment until the following saturday. this did not put me in a good place. i had moments of feeling okay, but i think alot of it was me forcing myself to try and feel better, to try and trick my head to say oh no, this is day i'm supposed to be feeling good, so i will feel good. the power of positive thinking, i was hoping, which worked for a few days.
i think emotionally i did not do well this round at all. i went to visit my work to see some friends and talk to them about the fact that i dont think i can return to work just yet because of the uncertainty of my treatment right now. this visit was good and bad. it was good because it was fun to see people, and everyone was so supportive and all that, but it also depressed me because it was like i was getting a glimpse of my 'normal life' where i worked all day, talked to lots of people, went from meeting to meeting, answered questions and felt like a contributing member of society. but the reality is right now, i sit at home, and for half the time really just feel like crap and sit and watch tv. i know for most this would be a dream come true to get a break like this, which it is nice, and it's a bigger bonus that it's summer and not winter, but for me it's hard. it's hard when chris comes home and where we used to sit and talk about our days over dinner, all i have to say is "i really hate when regis is on vacation and kelly has to fake it with a guest host"
it doesnt help that i have always been a person that can escape into tv land when i'm feeling down, it's always been a friend to me. but this round i kind got sick of it, i got sick of reading, i just got sick of it all. and then it happened. it all hit me. this whole situation hit me like a bus going 80. so many people have said to me, you're being so positive, that's great, keep that up, even my oncologist who deals with breaking the news of people having cancer everyday said 'you're being really calm right now, are you okay?" and just this weekend i allowed myself not to be ok. this situation sucks. this isnt some glorified summer vacation. i have cancer and i am going through chemotherapy. i feel sick alot of the time. i cant even walk down the street without getting winded some days. i was supposed to be getting married in a few months, i should be shopping for bridal shower dresses and outfits for my honeymoon. we dont even know when we are going to be able to get married and it sucks, everything was going so perfectly in our lives and this had to happen and i just dont get it, it's not fair.
but thats what i have to allow myself, it's not all sunshine and rainbows, i have to allow myself these moments of 'this sucks' because otherwise i cant balance it with the positivity of taking this all one day at a time, and knowing that i will someday look back on this and it will seem like a small blip on the radar. i was having a hard time accepting that i would one day be a cancer survivor because that means at one point i had to be a victim. i dont in general like to 'play the victim' but i think part of this illness is accepting what is going on, not just try and ignore it and hope it goes away. i think it's part of surviving it.
Tuesday, May 25, 2010
cycle one...complete!
so chemo 'cycles' are split into two sessions, 1a and 1b. so now that i have completed 1a and 1b i am officially done with one cycle of chemo! yay! two more cycles to go (4 more visits) before the doctors re-evaluate.
so this time around there were positives and negatives to having already been through it. on the one hand i was prepared, i kind of knew what to expect. on the other hand, i knew what to expect and that was a few days of feeling really crappy and miserable. but on the positive side, my doctors adjusted my meds and i was much more coherent for the entire weekend after the chemo.
it was the same deal as the first time around, go into dana farber around 1015am on thursday, get my vital signs taken, talk to the doctor, get an IV started, and sit around and wait for a bit for the pharmacy to send up my chemo drugs. this week, in addition to chris, my mom and stepdad david were in attendance. they got to meet my nurse Kerry and my mom got to get more of a lay of the land which i think helps her in dealing with all of this. so once again they had an issue with my veins and had to switch the IV before starting the chemo, and nurse kerry and the phlebotomist danny decided that they are not going to have such an issue that i will need a port, they are going to make it work. which was great news to me because i'm not really interested in having another surgery type situation anytime soon. once everything with my IV was settled i buckled up and got ready for my second experience with chemo.
this time around we had some interesting neighbors in the infusion room. next to us was a couple in their late 60s, early 70s, the wife was being treated and the husband was sitting uncomfortably close to chris, like their arms were touching. and it must have been the lady's first time there because she was filling out her questionnaire and there is a question asking if you are sexually active, at which point the lady asked the nurse for clarification, and the husband turned to chris and said "i dont know about her, but i am" these are the moments people, these are the kind of shenanigans you can expect in an infusion room.
also during this visit i was informed of my low white blood cell count. unfortunately, after chemo your white blood cell counts are at their lowest 10-14 days after treatment, and for me that is exactly when i go back to get more, so through out this whole process i will have a low count. the normal is 2.0-6.4 and i was at a .04. so what does this mean for me? well i have to be extra cautious around sick people, use normal or a little above normal hand washing routines, try to stay away from school aged children since they are just a breading ground for germs, and take extra care with my diet. make sure things are well washed and well cooked, it's pretty much a similar diet to a pregnant person, no sushi, cheeses have to pasteurized, etc. and if i do feel sick and spike a fever, i have to go to the hospital, so this has urged chris and i to purchase a thermometer, something i never really thought about having on hand, but now is a necessity.
but all in all this round was a little easier to deal with than the last one. friday i was more alert and actually incredibly hungry the entire day. i think this is because on thursday they give me a steroid to boost the effects of the anti-nausea meds and it left me ravenous. and then saturday and sunday were my normal sleepy lazy days that i didnt really feel like leaving the house or doing much of anything, and needed frequent naps to get through the day.
now today is a beautiful 85 degree day and i think i might go sit outside and read my newest toy, my kindle courtesy of my aunts, uncle, and cousins!
so this time around there were positives and negatives to having already been through it. on the one hand i was prepared, i kind of knew what to expect. on the other hand, i knew what to expect and that was a few days of feeling really crappy and miserable. but on the positive side, my doctors adjusted my meds and i was much more coherent for the entire weekend after the chemo.
it was the same deal as the first time around, go into dana farber around 1015am on thursday, get my vital signs taken, talk to the doctor, get an IV started, and sit around and wait for a bit for the pharmacy to send up my chemo drugs. this week, in addition to chris, my mom and stepdad david were in attendance. they got to meet my nurse Kerry and my mom got to get more of a lay of the land which i think helps her in dealing with all of this. so once again they had an issue with my veins and had to switch the IV before starting the chemo, and nurse kerry and the phlebotomist danny decided that they are not going to have such an issue that i will need a port, they are going to make it work. which was great news to me because i'm not really interested in having another surgery type situation anytime soon. once everything with my IV was settled i buckled up and got ready for my second experience with chemo.
this time around we had some interesting neighbors in the infusion room. next to us was a couple in their late 60s, early 70s, the wife was being treated and the husband was sitting uncomfortably close to chris, like their arms were touching. and it must have been the lady's first time there because she was filling out her questionnaire and there is a question asking if you are sexually active, at which point the lady asked the nurse for clarification, and the husband turned to chris and said "i dont know about her, but i am" these are the moments people, these are the kind of shenanigans you can expect in an infusion room.
also during this visit i was informed of my low white blood cell count. unfortunately, after chemo your white blood cell counts are at their lowest 10-14 days after treatment, and for me that is exactly when i go back to get more, so through out this whole process i will have a low count. the normal is 2.0-6.4 and i was at a .04. so what does this mean for me? well i have to be extra cautious around sick people, use normal or a little above normal hand washing routines, try to stay away from school aged children since they are just a breading ground for germs, and take extra care with my diet. make sure things are well washed and well cooked, it's pretty much a similar diet to a pregnant person, no sushi, cheeses have to pasteurized, etc. and if i do feel sick and spike a fever, i have to go to the hospital, so this has urged chris and i to purchase a thermometer, something i never really thought about having on hand, but now is a necessity.
but all in all this round was a little easier to deal with than the last one. friday i was more alert and actually incredibly hungry the entire day. i think this is because on thursday they give me a steroid to boost the effects of the anti-nausea meds and it left me ravenous. and then saturday and sunday were my normal sleepy lazy days that i didnt really feel like leaving the house or doing much of anything, and needed frequent naps to get through the day.
now today is a beautiful 85 degree day and i think i might go sit outside and read my newest toy, my kindle courtesy of my aunts, uncle, and cousins!
Wednesday, May 19, 2010
run forest run!!!
so i am going to use this blog post to give a shout out to some of my loved ones that are doing a great thing in honor of me.
a few weeks ago chris and i went down to providence to watch my brother complete his first half marathon. a goal he had been working on few a few months. while we were standing at the finish line watching the other runners come in, chris said "that's it, i'm doing this" he had been looking for a way to do something 'for me' since i have to go through all this crap. and after talking to my brother about it, they did some research and found a half marathon in october in newport. they have formed a team through dana farber and have set up a fundraising page for people to donate. all proceeds help support their amazing hospital as well as all their research they are doing to hopefully one day find a cure for cancer.
once chris and brian started sending out emails about this, more people wanted to join their team. my cousin tim, our good friend brady, and my two coworkers/friends greg and audra all have decided to run as well.
it means a lot to me that everyone wants to help support me by either running or donating money. even if it's not for me, if it's for someone you know that has been affected by this awful disease.
so if you want to help out, here's the website http://www.rundanafarber.org/faf/donorReg/donorPledge.asp?ievent=326685&supid=268072961
once chris and brian started sending out emails about this, more people wanted to join their team. my cousin tim, our good friend brady, and my two coworkers/friends greg and audra all have decided to run as well.
it means a lot to me that everyone wants to help support me by either running or donating money. even if it's not for me, if it's for someone you know that has been affected by this awful disease.
so if you want to help out, here's the website http://www.rundanafarber.org/faf/donorReg/donorPledge.asp?ievent=326685&supid=268072961
also, if you know anything about chris, the kid is dedicated, so of course once he decided he was training for a half marathon, game on. he found websites that track his progress, he started a training program and bought all new stuff for his new career as a long distance runner. he and my brother will be running various 5ks and 10ks all summer. and now all him and brady text about is their 'training' it's nice though, at least it gives chris some sort of outlet to get the stress of this whole thing out.
and since chris is the team captain, dana farber has been sending him some of the team materials as they reach different fundraising goals. if there is another thing you might know about chris is that he loves free stuff. free tshirts, hats, the kid is in heaven.
so you can look forward to this stud running the streets of newport this fall
Wednesday, May 12, 2010
i survived round 1...i think
ok, so today has been the first day i felt like myself again since round one of the chemo. i didnt want to blog before this because i was hoping i would just feel better soon. and i do.
so chemo was thursday, that day i felt pretty normal, just emotionally drained from the day. friday...whoooooo friday. i really dont have much memory of friday at all. well i have memories of some weird stuff that was happening that i can only attribute to the anti nausea medicine i was on and i wasnt really eating that much. i basically was in and out of consiousness all day and said some weird things to people via texts, emails, phone, and oh yes, i wrote my last blog post while basically intoxicated on these meds. chris mentioned it might be a good idea for me to wait a day or two before blogging. i think that's a good decision.
then saturday, i felt a little better, but still quite nausous and zero energy. for example, i took a shower and needed to take a two hour nap afterwards because it took so much out of me. then i was basically useless that whole day. chris thought it would be a good idea to at least get me out of the house, so we went over to petco and bought a beta fish and named him sammie. i'm actually glad we did this, it's nice to have a little company during the day and watching a fish swim around is actually quite calming.
then it was sunday, mothers day, we went down the cape and had brunch with my family, after this adventure i needed a big time nap. oh and also this was the first day i started to experience dry mouth. when i say dry mouth i mean a feeling that i had like canqers all over my mouth or something, it was riciculously uncomfortable and i didnt know what was going on. i called dr. bhatt and she recomended a dry mouth wash, which helped with the problem and has since gone away. then sunday night the brady's came over and made us mac and cheese. god i love mac and cheese.
monday i tried to not take any medicine since most of the directions we had been given were to only take them for 2-3 days after chemo and i in general dont like taking perscription drugs. i made it most of the day but then when chris got home from work we took a ride to cvs and it really wiped me out and i started to feel sick again, so i took one pill that night, then i felt fine.
then yesterday, tuesday. i had an interesting situation. so most of those that know me know that i hate washing my hair, i do it basically because society tells me i need to, but in general i hate the process, it takes forever, i have curly hair but i like it straight, which takes a while, i just hate it. so you can imagine how much i have been reveling in not really having to make myself presentable, or wash my hair, or do really anything for that matter, because let's face it, i have cancer, who's going to say something to me? so yesterday it was getting obscene with my hair so i had to wash it. i got in the shower and while i was washing my hair i had to like concentrate on breathing because i was starting to feel so sick. i rushed through the process and got out of the shower, i really thought i was going to throw up, which i havent done yet, but we all know that feeling. i sat on the bathroom floor for like five minutes until this passed, then i felt fine.
eating has been weird, i like havent really been hungry at all, but i know i need to eat consistently so i have just been basically making meals at the same time everyday. it's weird i feel better once i eat, but it doesnt come with that hungry feeling. and for someone that has basically been hungry her whole life, this is a weird change.
it's so weird, i never really thought of myself as an 'energetic' person, but this thing is really kicking my ass. well i shouldnt put it like that because that makes it sound like i'm letting it get the best of me, which i'm not, but man, this really sucks. i have to take breathers after showering? i cant even go for like a 20 minute walk without feeling like i'm going to die when it's over? but, i have no choice but to think positive. this will get better with every round, my body will adjust and every time it will take less and less time to recover.
so chemo was thursday, that day i felt pretty normal, just emotionally drained from the day. friday...whoooooo friday. i really dont have much memory of friday at all. well i have memories of some weird stuff that was happening that i can only attribute to the anti nausea medicine i was on and i wasnt really eating that much. i basically was in and out of consiousness all day and said some weird things to people via texts, emails, phone, and oh yes, i wrote my last blog post while basically intoxicated on these meds. chris mentioned it might be a good idea for me to wait a day or two before blogging. i think that's a good decision.
then saturday, i felt a little better, but still quite nausous and zero energy. for example, i took a shower and needed to take a two hour nap afterwards because it took so much out of me. then i was basically useless that whole day. chris thought it would be a good idea to at least get me out of the house, so we went over to petco and bought a beta fish and named him sammie. i'm actually glad we did this, it's nice to have a little company during the day and watching a fish swim around is actually quite calming.
then it was sunday, mothers day, we went down the cape and had brunch with my family, after this adventure i needed a big time nap. oh and also this was the first day i started to experience dry mouth. when i say dry mouth i mean a feeling that i had like canqers all over my mouth or something, it was riciculously uncomfortable and i didnt know what was going on. i called dr. bhatt and she recomended a dry mouth wash, which helped with the problem and has since gone away. then sunday night the brady's came over and made us mac and cheese. god i love mac and cheese.
monday i tried to not take any medicine since most of the directions we had been given were to only take them for 2-3 days after chemo and i in general dont like taking perscription drugs. i made it most of the day but then when chris got home from work we took a ride to cvs and it really wiped me out and i started to feel sick again, so i took one pill that night, then i felt fine.
then yesterday, tuesday. i had an interesting situation. so most of those that know me know that i hate washing my hair, i do it basically because society tells me i need to, but in general i hate the process, it takes forever, i have curly hair but i like it straight, which takes a while, i just hate it. so you can imagine how much i have been reveling in not really having to make myself presentable, or wash my hair, or do really anything for that matter, because let's face it, i have cancer, who's going to say something to me? so yesterday it was getting obscene with my hair so i had to wash it. i got in the shower and while i was washing my hair i had to like concentrate on breathing because i was starting to feel so sick. i rushed through the process and got out of the shower, i really thought i was going to throw up, which i havent done yet, but we all know that feeling. i sat on the bathroom floor for like five minutes until this passed, then i felt fine.
eating has been weird, i like havent really been hungry at all, but i know i need to eat consistently so i have just been basically making meals at the same time everyday. it's weird i feel better once i eat, but it doesnt come with that hungry feeling. and for someone that has basically been hungry her whole life, this is a weird change.
it's so weird, i never really thought of myself as an 'energetic' person, but this thing is really kicking my ass. well i shouldnt put it like that because that makes it sound like i'm letting it get the best of me, which i'm not, but man, this really sucks. i have to take breathers after showering? i cant even go for like a 20 minute walk without feeling like i'm going to die when it's over? but, i have no choice but to think positive. this will get better with every round, my body will adjust and every time it will take less and less time to recover.
Friday, May 7, 2010
chemo: day 1
so yesterday chris and i went into dana farber to start my treatment. we of course got there like an hour early, but whatever.
so i know i have gotten a lot of questions on what it feels like and how i am feeling now, so i just wanted go over those things with you. i know i had never been in this kind of situation before, so i'm sure neither have a lot of you.
so we get there and the leukemia and lymphoma cases kind of have their own area on the first floor. i have to go in and get my height and weight checked, then go back to sit in the waiting room. it was a particularly packed day in there, and i literally started to feel the weight of everything that was happening to me. i couldn't sit still, i wouldn't let Chris touch me, i just didnt want to be starting this and not out here in the lobby with very sick looking people with masks and gloves, some not being able to walk. i wanted to be anywhere but there at that moment, at work having the day fly by because im so busy, over playing with my mom's dog...anywhere. it sucks. i just started to get up to just wander around because i could no longer sit still when they called my name 'holy shit, I'm going into the infusion area, where they give the chemo, for cancer, and it's for me. i don't get it'
so after having a minor breakdown the nurse: Kerri, brought me over to a chair and said she was going to put an I.V in. arm one, no luck. arm 2, no luck. while kerri was going over paperwork with me, it came to the talk about losing my hair. and i really started to lose it, i think being a female she got it, and knows there is nothing she cant say other than the great wigs they have now, etc, i gathered myself together. Kerri also said it's my first time it's all very scary and overwhelming.
Kerri calls in reinforcements to get the IV and she gets in first time. she says that nurse always shows everyone up. well anyway the IV was in and i was going to get about half a bag of saline before starting the chemo.-side note, never did the words 'just a pinch' come out of their mouths...i'm just saying...
our fellow, Dr. Bhatt came over and just asked any remaining questions i had, and wanted to let me know that most people in this infusion room don't have what i have, so i shouldn't think down the line, that's going to be me. which really helped a lot in thinking about it.
so this would be three or so hours chris and i sat around, luckily i had my laptop. then the volunteers roll around a cart that chris did everything but dive completely into. they had sandwiches, chips, (sun chips i might add)and drinks. so i had a nice lunch of that. then still waiting, my stepdad david stopped by on his lunch break to check out the situation. he likes to poke his head around.
so they finally started administering the drugs at like 1-130. the first two Kerri sat and administered them through huge syringe. the first, the "A' of the treatment is red, which i am told will make my pee orange. and oh boy did it. i had forgotten about her warnings when i was in the bathroom and got really freaked out. the second was also given with a syringe, the third went through my IV and lasted about 10 mins, and the last one went through IV and lasted about an hour. i had to pee a lot throughout this process and i always get nervous because, well I'm carting cancer drugs around.
so after that i was done! free to leave, but not before picking up
my prescriptions!here is a little snapshot of all the anti-nausea pills
oh and rested assured chris has thoroughly read through all those pamphlets and has begun a med schedule up on the fridge.
driving home i had weird spurts of having a headache and then feeling that i might throw up, but then that went away, i just wanted to get home. for an hour or two i just had an intense stomach pain/nausea.
right now, the day after i just feel groggy, like i'm walking around slower its taking me longer to type than usual, and texting is hard, its just like double vision on the screen.
ok that's all for now. you start to see the real effects 12-48 hours after treatment....so it looks like a big weekend of fun in bed
so i know i have gotten a lot of questions on what it feels like and how i am feeling now, so i just wanted go over those things with you. i know i had never been in this kind of situation before, so i'm sure neither have a lot of you.
so we get there and the leukemia and lymphoma cases kind of have their own area on the first floor. i have to go in and get my height and weight checked, then go back to sit in the waiting room. it was a particularly packed day in there, and i literally started to feel the weight of everything that was happening to me. i couldn't sit still, i wouldn't let Chris touch me, i just didnt want to be starting this and not out here in the lobby with very sick looking people with masks and gloves, some not being able to walk. i wanted to be anywhere but there at that moment, at work having the day fly by because im so busy, over playing with my mom's dog...anywhere. it sucks. i just started to get up to just wander around because i could no longer sit still when they called my name 'holy shit, I'm going into the infusion area, where they give the chemo, for cancer, and it's for me. i don't get it'
so after having a minor breakdown the nurse: Kerri, brought me over to a chair and said she was going to put an I.V in. arm one, no luck. arm 2, no luck. while kerri was going over paperwork with me, it came to the talk about losing my hair. and i really started to lose it, i think being a female she got it, and knows there is nothing she cant say other than the great wigs they have now, etc, i gathered myself together. Kerri also said it's my first time it's all very scary and overwhelming.
Kerri calls in reinforcements to get the IV and she gets in first time. she says that nurse always shows everyone up. well anyway the IV was in and i was going to get about half a bag of saline before starting the chemo.-side note, never did the words 'just a pinch' come out of their mouths...i'm just saying...
our fellow, Dr. Bhatt came over and just asked any remaining questions i had, and wanted to let me know that most people in this infusion room don't have what i have, so i shouldn't think down the line, that's going to be me. which really helped a lot in thinking about it.
so this would be three or so hours chris and i sat around, luckily i had my laptop. then the volunteers roll around a cart that chris did everything but dive completely into. they had sandwiches, chips, (sun chips i might add)and drinks. so i had a nice lunch of that. then still waiting, my stepdad david stopped by on his lunch break to check out the situation. he likes to poke his head around.
so they finally started administering the drugs at like 1-130. the first two Kerri sat and administered them through huge syringe. the first, the "A' of the treatment is red, which i am told will make my pee orange. and oh boy did it. i had forgotten about her warnings when i was in the bathroom and got really freaked out. the second was also given with a syringe, the third went through my IV and lasted about 10 mins, and the last one went through IV and lasted about an hour. i had to pee a lot throughout this process and i always get nervous because, well I'm carting cancer drugs around.
so after that i was done! free to leave, but not before picking up
my prescriptions!here is a little snapshot of all the anti-nausea pills
oh and rested assured chris has thoroughly read through all those pamphlets and has begun a med schedule up on the fridge.
driving home i had weird spurts of having a headache and then feeling that i might throw up, but then that went away, i just wanted to get home. for an hour or two i just had an intense stomach pain/nausea.
right now, the day after i just feel groggy, like i'm walking around slower its taking me longer to type than usual, and texting is hard, its just like double vision on the screen.
ok that's all for now. you start to see the real effects 12-48 hours after treatment....so it looks like a big weekend of fun in bed
Wednesday, May 5, 2010
dum dum da dum
so it's what every girl dreams about. having the love of your life get down on one knee and ask you to spend the rest of your life with him. you are basically floating on air for the next six months, as you plan the big day. it was all going so smoothly. the cape is very important to the both of us, it's where we got engaged, it's where the both of us spent our summers throughout our childhood, it's where we go for a nice day trip when we just want to get away. so it only made sense to do the whole cape wedding thing.
we spent the first two weeks of our engagement searching for the perfect spot. we went from country club to yacht clubs to mansions to seaside locales. we fell in love with a beautiful room at willow bend country club in mashpee, floor to ceiling windows, an outdoor space to have a lounge area, on site villas that the wedding party could stay at, the whole 9 yards. once we had the place we were off, finding a photographer, dj, florists, cake bakers, invitation lady, we had it all. and thanks to not only my own, but also my fiance's OCD tendencies, we had it organized. a big wedding for 200 guests is what we were going to do, and with the help of our families and our own savings, we would be able to afford it and not owe anyone anything. and then of course, i was diagnosed with cancer.
now i dont want this blog to turn into a 'then i got cancer and my life ended' sort of thing, because that's not what this is about and that is not how i feel AT ALL. but my diagnosis has alot to do with the decisions we have made. and when i say we i mean myself and chris. my fiance is my best friend, he is one of the kindest, most generous, greatest people you will ever meet. it also doesnt hurt that he is adorable. we are a real team, and although i always thought we were as close as we could be, this whole process has brought us together on a completely different level. we are handling this together, we will get through this together. he has been there at every appointment, every weird test, i love him more than words can say and i dont know if i could be as calm as i am right now without him.
after meeting with the first oncologist, she told me that i would probably lose my hair, maybe lose some weight, and just in general feel sick and tired as a result of the chemotherapy. she also initially thinks i might need radiation at the end of my chemo. one of my first questions was "well, we are getting married in october, is this possible?" she took a moment, thought about it and informed me that she thought it was 'doable' my eyes started to fill up with tears and she tilted her head and said 'i know, i just got married 3 years ago, dealing with vendors and stuff is hard, but if you feel comfortable wearing a wig on your wedding day, i think you can do it, and we can push off the radiation a month and do it in november' no decisions were made at this point.
but when chris came home from work we talked about it. how important is this wedding to us? i mean, our marriage is important to us, but how important is the wedding? is it important enough to us that we forge ahead even when i am going through chemotherapy?!!? am i willing to risk my health for a party?
but what would we tell people? the save the dates went out, the deposits, the dresses, the honeymoon is booked. over the next few days we both thought about it and would talk about it for like five minutes here and there, what if we wait a year, what if i have no side effects to the treatment, what if i need more treatment than they think? and in the back of my mind i kept thinking, i dont want this anymore. it had only been two weeks and my life was put into a completely different perspective. it was like i didnt know the girl that was planning this big wedding. do i want to spend my wedding reception going around and talking to 200 guests?
so on the way to breakfast one sunday i just said "chris i think i want to do a destination wedding" and he said "i know babe" so we talked about it, figured we could slash our guest list by more than half, just invite immediate family and our closest friends, and then have a BBQ or something next summer.
i have to say i was nervous to tell people, just because i was kind of embarrassed that we had sent the save the dates out just a month before and now we are asking some of our family to make this even larger commitment to join us. but i have to say, 1. everyone has been very supportive and understanding of our decision. 2. people seem excited!
so that's that.
we spent the first two weeks of our engagement searching for the perfect spot. we went from country club to yacht clubs to mansions to seaside locales. we fell in love with a beautiful room at willow bend country club in mashpee, floor to ceiling windows, an outdoor space to have a lounge area, on site villas that the wedding party could stay at, the whole 9 yards. once we had the place we were off, finding a photographer, dj, florists, cake bakers, invitation lady, we had it all. and thanks to not only my own, but also my fiance's OCD tendencies, we had it organized. a big wedding for 200 guests is what we were going to do, and with the help of our families and our own savings, we would be able to afford it and not owe anyone anything. and then of course, i was diagnosed with cancer.
now i dont want this blog to turn into a 'then i got cancer and my life ended' sort of thing, because that's not what this is about and that is not how i feel AT ALL. but my diagnosis has alot to do with the decisions we have made. and when i say we i mean myself and chris. my fiance is my best friend, he is one of the kindest, most generous, greatest people you will ever meet. it also doesnt hurt that he is adorable. we are a real team, and although i always thought we were as close as we could be, this whole process has brought us together on a completely different level. we are handling this together, we will get through this together. he has been there at every appointment, every weird test, i love him more than words can say and i dont know if i could be as calm as i am right now without him.
after meeting with the first oncologist, she told me that i would probably lose my hair, maybe lose some weight, and just in general feel sick and tired as a result of the chemotherapy. she also initially thinks i might need radiation at the end of my chemo. one of my first questions was "well, we are getting married in october, is this possible?" she took a moment, thought about it and informed me that she thought it was 'doable' my eyes started to fill up with tears and she tilted her head and said 'i know, i just got married 3 years ago, dealing with vendors and stuff is hard, but if you feel comfortable wearing a wig on your wedding day, i think you can do it, and we can push off the radiation a month and do it in november' no decisions were made at this point.
but when chris came home from work we talked about it. how important is this wedding to us? i mean, our marriage is important to us, but how important is the wedding? is it important enough to us that we forge ahead even when i am going through chemotherapy?!!? am i willing to risk my health for a party?
but what would we tell people? the save the dates went out, the deposits, the dresses, the honeymoon is booked. over the next few days we both thought about it and would talk about it for like five minutes here and there, what if we wait a year, what if i have no side effects to the treatment, what if i need more treatment than they think? and in the back of my mind i kept thinking, i dont want this anymore. it had only been two weeks and my life was put into a completely different perspective. it was like i didnt know the girl that was planning this big wedding. do i want to spend my wedding reception going around and talking to 200 guests?
so on the way to breakfast one sunday i just said "chris i think i want to do a destination wedding" and he said "i know babe" so we talked about it, figured we could slash our guest list by more than half, just invite immediate family and our closest friends, and then have a BBQ or something next summer.
i have to say i was nervous to tell people, just because i was kind of embarrassed that we had sent the save the dates out just a month before and now we are asking some of our family to make this even larger commitment to join us. but i have to say, 1. everyone has been very supportive and understanding of our decision. 2. people seem excited!
so that's that.
Wednesday, April 28, 2010
one step at a time...
so now that i have met with the doctors at dana farber, and scheduled my treatments, one big question people have asked is what about work. it's already stressful enough being in your 20s, trying to start your career and figure out how you're going to be successful, not to mention in this economy when your friends are being laid off or having their hours cut and cant find new jobs, so having this major road block throw up in my path doesnt help.
so i happen to work for a unique company. we are a private, family owned, marketing agency. we deal with large scale corporate events and digital marketing (websites, animation, print, etc) i work in account management and also i also happen to work on the marketing side as well. this job is very much reactive, i never really know what i might be working on when i come into work in the morning, and that's one of the reasons i love my job. it's fun, the people are fun and creative and it's just a very vibrant place to work. a job like this isn't predictable.
based on the recommendations of my doctors, as well as talking with friends and family, i will be taking a short leave of absence from my job, just to see how my body handles treatment. i've been told the first month can be the hardest, just because you dont know what will happen, i could be sick the whole time, or i could be fine. either way, my concentration and focus right now needs to be on myself and my health. if there is one time to be selfish it's now. so basically i will go on short term disability, and once my treatment gets going i will decide what i can handle in terms of work. no matter what i will be out of work at least once ever other week for the next six months. after discussions with my boss, it will very much be up to me as to what i want to do. as i said, my job can be unpredictable at times, but i'm learning so is life!
everyone at my work has been so supportive and downright amazing. i basically had to take two weeks off when i was going through all these tests and go to all these different doctors, and never for a moment did i have to worry about the security of my job. at times like these you realize what is important and my boss and coworkers know that. this situation is unique and one that i dont think my company has dealt with, let alone my coworkers.
i think i'm the type of person who wont be content just sitting around being sick all day for the next six months. i'm going to want something, maybe as a distraction, or many just as a sense of normalcy. my doctors have said many people work through treatment, it's really up to me as to what i want to do. so as with everything in my life right now, i'm taking it one step at a time and we will see how it goes.
so i happen to work for a unique company. we are a private, family owned, marketing agency. we deal with large scale corporate events and digital marketing (websites, animation, print, etc) i work in account management and also i also happen to work on the marketing side as well. this job is very much reactive, i never really know what i might be working on when i come into work in the morning, and that's one of the reasons i love my job. it's fun, the people are fun and creative and it's just a very vibrant place to work. a job like this isn't predictable.
based on the recommendations of my doctors, as well as talking with friends and family, i will be taking a short leave of absence from my job, just to see how my body handles treatment. i've been told the first month can be the hardest, just because you dont know what will happen, i could be sick the whole time, or i could be fine. either way, my concentration and focus right now needs to be on myself and my health. if there is one time to be selfish it's now. so basically i will go on short term disability, and once my treatment gets going i will decide what i can handle in terms of work. no matter what i will be out of work at least once ever other week for the next six months. after discussions with my boss, it will very much be up to me as to what i want to do. as i said, my job can be unpredictable at times, but i'm learning so is life!
everyone at my work has been so supportive and downright amazing. i basically had to take two weeks off when i was going through all these tests and go to all these different doctors, and never for a moment did i have to worry about the security of my job. at times like these you realize what is important and my boss and coworkers know that. this situation is unique and one that i dont think my company has dealt with, let alone my coworkers.
i think i'm the type of person who wont be content just sitting around being sick all day for the next six months. i'm going to want something, maybe as a distraction, or many just as a sense of normalcy. my doctors have said many people work through treatment, it's really up to me as to what i want to do. so as with everything in my life right now, i'm taking it one step at a time and we will see how it goes.
Thursday, April 22, 2010
just a little pinch!
oh the fun i had in the three week span from the first doctors visit to when i landed at dana farber to begin treatment. i could get to milton hospital with my eyes closed at this point we were there so much. i still believe i am the youngest patient that hospital has seen by at least 30 years. and for every test and procedure i had to get done, it somehow involved getting blood drawn or getting an IV. and they must teach nurses this in school to say "just a pinch!" when the needle goes in. i really would like them to switch up the sayings, because it make me expect it even more. i became a human pin cushion for a minute there and i have the bruises to prove it.
the first test was the CT Scan. this test requires prep! those are always the most fun. prep just means anything from not eating or drinking, to drinking some special solutions, to god knows what else. for this scan i had to drink two large containers of barium liquid. this is so the machine can see my insides better when i'm in there. let me describe the taste for you. hmmmm....imagine like a watered down strawberry smoothie, but thick. i tried my best to imagine it as some sort of cocktail, perhaps i nice glass of chardonnay, but that crap tastes...well, like crap. and i had to drink TWO OF THEM. and yes i made Chris try it.
then after not eating or drinking other than the evil drink, i go in for the test, they inject you with a contrast that gives you the distinct sensation that you are peeing yourself. and its not like they dont warn you, they tell you like 3 or 4 times, but every time i have to ask out loud "am i peeing myself?" i wasnt. but those were the first images of lumps the doctors saw. TWO on my neck and evidence of some swelling in my chest.
off to the needle biopsy!!! this was in a surgeon's office. also this was after my doctor's office called and said "you need to go to milton hospital and get this biopsied...NOW" awesome. so you can imagine my calm and comfort. so, without any numbing, or prep at all the doctor placed a needle in my neck, which chris later claimed i "took like a champ" and removed some cells from the lump. oh and instead of 'just a pinch' i got "this is going to feel like a mosquito bite...a big mosquito" thank you dr. k.
when the results of that biopsy came in, they were 99% sure of what it was, but needed that extra 1% to take action. "so looks like we are going to have to do a little day surgery, go in and get a piece of it" super! when can i do this? tomorrow? great, cant wait. so they put me under general anesthesia and made a small (even though it still looks rather large and unattractive) incision in my neck.
the surgeon called the next day and confirmed the results he had already prepared me for. nodular sclerosis hodgkin's lymphoma. time to meet with the oncologist...
so i met with dr. sarah may in her quincy office. filled out A LOT of paper work and had an interesting time with the family history (it can be pretty frightening to see it all on paper like that) she went over the disease and treatment options and made recommendations for oncologists at dana farber. also at this appointment it was recommended to move forward with finishing 'staging' this included more blood work (yay!) and a couple of tests at the hospital.
so first up was a PET scan which, that's to my handy dandy lymphoma book, i learned is:
then i had to get a MUGA scan:
then to finish up, i had a pulmonary test just to test my lung functions. i passed with flying colors, because let's face it i'm an athletic specimen. but seriously i questioned this after feeling like i was going to pass out after the short breath test. i cant imagine how really out of shape people or the elderly do this.
so after all of this, i met with my new oncologist at the dana farber cancer center, Dr. Lacasce, who is really smart and down to earth and really knows her stuff. my course of treatment will be 6 months of chemotherapy, which i will get once every other week at dana farber in boston, starting on may 6th. it should take a few hours every time, so i will be getting a lot of reading done, as well as some prime people watching, a favorite pastime of mine.
the first test was the CT Scan. this test requires prep! those are always the most fun. prep just means anything from not eating or drinking, to drinking some special solutions, to god knows what else. for this scan i had to drink two large containers of barium liquid. this is so the machine can see my insides better when i'm in there. let me describe the taste for you. hmmmm....imagine like a watered down strawberry smoothie, but thick. i tried my best to imagine it as some sort of cocktail, perhaps i nice glass of chardonnay, but that crap tastes...well, like crap. and i had to drink TWO OF THEM. and yes i made Chris try it.
then after not eating or drinking other than the evil drink, i go in for the test, they inject you with a contrast that gives you the distinct sensation that you are peeing yourself. and its not like they dont warn you, they tell you like 3 or 4 times, but every time i have to ask out loud "am i peeing myself?" i wasnt. but those were the first images of lumps the doctors saw. TWO on my neck and evidence of some swelling in my chest.
off to the needle biopsy!!! this was in a surgeon's office. also this was after my doctor's office called and said "you need to go to milton hospital and get this biopsied...NOW" awesome. so you can imagine my calm and comfort. so, without any numbing, or prep at all the doctor placed a needle in my neck, which chris later claimed i "took like a champ" and removed some cells from the lump. oh and instead of 'just a pinch' i got "this is going to feel like a mosquito bite...a big mosquito" thank you dr. k.
when the results of that biopsy came in, they were 99% sure of what it was, but needed that extra 1% to take action. "so looks like we are going to have to do a little day surgery, go in and get a piece of it" super! when can i do this? tomorrow? great, cant wait. so they put me under general anesthesia and made a small (even though it still looks rather large and unattractive) incision in my neck.
the surgeon called the next day and confirmed the results he had already prepared me for. nodular sclerosis hodgkin's lymphoma. time to meet with the oncologist...
so i met with dr. sarah may in her quincy office. filled out A LOT of paper work and had an interesting time with the family history (it can be pretty frightening to see it all on paper like that) she went over the disease and treatment options and made recommendations for oncologists at dana farber. also at this appointment it was recommended to move forward with finishing 'staging' this included more blood work (yay!) and a couple of tests at the hospital.
so first up was a PET scan which, that's to my handy dandy lymphoma book, i learned is:
Positron emission tomography (PET) is a nuclear medicine imaging technique which produces a three-dimensional image or picture of functional processes in the body. The system detects pairs of gamma rays emitted indirectly by a positron-emitting radionuclide (tracer), which is introduced into the body on a biologically active molecule. Images of tracer concentration in 3-dimensional or 4-dimensional space (the 4th dimension being time) within the body are then reconstructed by computer analysis. In modern scanners, this reconstruction is often accomplished with the aid of a CT X-ray scan performed on the patient during the same session, in the same machine.basically this was a crazy situation. like they had to administer the contrast with a steel drum and i couldn't be around children or pregnant people for at least a day because i would be radioactive. WHAT!? no, seriously they gave me a little piece of paper that said as much (see below). marc, my friendly, rather large russian fella, was there as my radiology tech, chris had a funny line: "i feel like i'm on an episode of 24 right now" marc really tried to hold in his laughter, but i mean this was comedy gold. oh and i had to drink another two bottles of that liquid barium crap, i only drank one though, marc said it was ok.
then i had to get a MUGA scan:
A MUGA scan (Multi Gated Acquisition Scan) is a time proven nuclear medicine test designed to evaluate the function of the right and left Ventricles of the Heart. It is also called Radionuclide Angiography, as well as Gated Blood Pool Imaging. This modality uniquely provides a Cine Image of the beating heart, and allows the interpreter to mathematically determine the efficiency of the individual chambers of the heart. MUGA scanning may be a valuable adjunct to the Echocardiogram.another test that i couldnt be around children or preggos. i asked why it was ok for me to have it, and they said something about the immune system and developmental blahblah...doesnt seem 100% safe to me, but who the hell am i?
then to finish up, i had a pulmonary test just to test my lung functions. i passed with flying colors, because let's face it i'm an athletic specimen. but seriously i questioned this after feeling like i was going to pass out after the short breath test. i cant imagine how really out of shape people or the elderly do this.
so after all of this, i met with my new oncologist at the dana farber cancer center, Dr. Lacasce, who is really smart and down to earth and really knows her stuff. my course of treatment will be 6 months of chemotherapy, which i will get once every other week at dana farber in boston, starting on may 6th. it should take a few hours every time, so i will be getting a lot of reading done, as well as some prime people watching, a favorite pastime of mine.
Wednesday, April 21, 2010
so it's the good kind?
so after the initial shock of my surgeon telling me he thought i had hodgkin's lymphoma, my first question was "is this the good kind?" and if you are a fan of curb your enthusiasm you might remember this episode (**warning there is swearing***) and have more of an appreciation for that question.
so here is my first educational blog.
there are two main types of of lymphoma: non-hodgkin's and hodgkin's. according to the leukemia and lymphoma society:
i dont know if that helps distinquish the two at all, but all i know is when i was doing my scary internet research on the two diseases the term "life-threatening" was associated with non-hodgkins, and not so much with hodgkin's.
from what my doctors tell me and what my research has taught me is that hodgkin's lymphoma is completely treatable. i have caught it early and i am taking all the right steps to begin treatment to beat this thing.
first steps: finish staging. the first oncologist i met with sent me for a series of tests to finalize my staging. she believes that i am stage two A. basically because i had two lymph nodes as well as some swelling of my chest lymph nodes. what are these fun tests? PET-scan, a heart test, and a lung test. the PET-scan is to get a better look at my insides 'below the belt' to see if there are any other lymph nodes floating around in there. the heart and lung test are to see how healthy i am before starting treatment.
what is treatment? well that was the answer i could just get out of people. the doctors kept saying 'medicines' ok....what kind of medicines? i wanted to be like ok am i going to lose my hair or what? basically what my treatment will be is chemotherapy with a possible round of radiation. the chemo will take about four months to complete, and then if needed, i will begin radiation after a month break.
what is chemotherapy? basically drugs that are given intravenously. my course of treatment will be the ABVD chemotherapy regimen, which is the standard treatment of Hodgkin's disease in the US. The abbreviation stands for the four drugs adriamycin, bleomycin, vinblastine, and dacarbazine.
what can i expect? probably nausea, fatigue, hair loss...you know, all fun sounding stuff.
my doctors have recommended me take the first month of my treatment off from work since i wont know how my body reacts. if i decide i cant return to work right away, i wont, if i can, i will. i'm not making any decisions on that right now. taking it one day at a time.
so the positive of this is yes, it's the good kind. very treatable. i live in one of the best cities in the world for cancer treatment and research, i am in good hands, i will get through this.
so here is my first educational blog.
there are two main types of of lymphoma: non-hodgkin's and hodgkin's. according to the leukemia and lymphoma society:
Lymphoma starts with a change to a lymphocyte. The change to the lymphocyte causes it to become a lymphoma cell. The lymphoma cells pile up and form masses that gather in the lymph nodes or other parts of the lymphatic system. Hodgkin lymphoma has characteristics that distinguish it from other diseases classified as lymphoma, including the presence of Reed-Sternberg cells. These are large, malignant cell found in Hodgkin lymphoma tissues and named for the scientists who first identified them.Non-Hodgkin lymphoma (NHL) represents a diverse group of diseases that are distinguished by the characteristics of the cancer cells associated with each disease type.
i dont know if that helps distinquish the two at all, but all i know is when i was doing my scary internet research on the two diseases the term "life-threatening" was associated with non-hodgkins, and not so much with hodgkin's.
from what my doctors tell me and what my research has taught me is that hodgkin's lymphoma is completely treatable. i have caught it early and i am taking all the right steps to begin treatment to beat this thing.
first steps: finish staging. the first oncologist i met with sent me for a series of tests to finalize my staging. she believes that i am stage two A. basically because i had two lymph nodes as well as some swelling of my chest lymph nodes. what are these fun tests? PET-scan, a heart test, and a lung test. the PET-scan is to get a better look at my insides 'below the belt' to see if there are any other lymph nodes floating around in there. the heart and lung test are to see how healthy i am before starting treatment.
what is treatment? well that was the answer i could just get out of people. the doctors kept saying 'medicines' ok....what kind of medicines? i wanted to be like ok am i going to lose my hair or what? basically what my treatment will be is chemotherapy with a possible round of radiation. the chemo will take about four months to complete, and then if needed, i will begin radiation after a month break.
what is chemotherapy? basically drugs that are given intravenously. my course of treatment will be the ABVD chemotherapy regimen, which is the standard treatment of Hodgkin's disease in the US. The abbreviation stands for the four drugs adriamycin, bleomycin, vinblastine, and dacarbazine.
what can i expect? probably nausea, fatigue, hair loss...you know, all fun sounding stuff.
my doctors have recommended me take the first month of my treatment off from work since i wont know how my body reacts. if i decide i cant return to work right away, i wont, if i can, i will. i'm not making any decisions on that right now. taking it one day at a time.
so the positive of this is yes, it's the good kind. very treatable. i live in one of the best cities in the world for cancer treatment and research, i am in good hands, i will get through this.
wait-what?
that was basically the reaction i had when the surgeon first said the words 'looks like hodgkin's lymphoma' he said it so casually, like 'ya i had a turkey sandwich for lunch' i remember sitting there and in my mind just saying 'wait-what...is he telling me i have cancer right now? am i sitting here on my lunch break hearing that i have cancer and the treatment is chemo and i have to lose my hair, and oh wait we are getting married in five months and have non refundable deposits and i have a job and student loans and wait-WHAT?!'
but i didn't have a big reaction on the outside. i've never really been big on emotions, some might see this as bitchy, snobby, maybe strong, i dont know. i've just never been one to like cry at commercials, not big into hugs, any invasion of personal space really, i always get uncomfortable when my fiance makes some big romantic gesture that i know most girls long for, hell, when he proposed my first reaction was "i think i'm going to throw up" that's just me.
maybe that's where i should start. me. most of you know me because i have either shared this link with you, or a friend of a friend sent this, but for those randoms out there in cyber space, let me catch you up.
my name is jenn, i am a perfectly healthy, (well, other than the cancer) 27 year old female. i grew up in stoughton, i am still friends with people i went to high school with and i like it, i think i'm pretty funny. i love my family. i have an older sister and brother, my mom is one of the strongest women i know, she's a little nutty but i like it, and my stepdad david should have his own reality show. oh and my mom has a pug baxter who is currently suffering from Lyme disease (it's been a rough month for my mom and her babies) i live with my amazing fiance chris in a lovely apartment in wrentham. we met in college and he is my best friend, we have been engaged since august 2009 and were planning an october 2010 wedding. i like to workout, shop, drink wine, try new restaurants, cook, clean, go on facebook, etc. pretty normal life.
in march 2010, i was doing my usual tuesday night routine, came home from work, got into my pajamas, washed my face, made dinner, cleaned up and sat down to watch the newest episode of american idol. there must have been a bruins game on or something because chris was in the bedroom. i was randomly rubbing my neck, and felt something weird, like a lump or something. usually i dont get too concerned with things like this, but something made me alarmed and i went in and had chris feel it. he said he didnt think it was anything, we all have weird things in our neck. i kind of forgot about it for a week or so and then one friday night i was out to dinner with my dear friends jenn and christy jenn happens to be a registered nurse and i asked her to feel the lump. she felt it, compared it to the other side of my neck and just said 'i would go to the doctor' ummm what? so of course for the next two days of the weekend i was imagining all the things it could be, a goiter, a tumor, a bug bite, who knows. all i knew was i was calling my doctor on monday and getting the first appointment available.
monday came, saw my lovely PCP, she said i think i will send you for a CT scan on wednesday. went for my scan, she called that day and said i want you to go in for a needle biopsy. thursday i met with the surgeon in his office, he did the needle biopsy and when i asked what he thought it might be he said 'ya, looks like hodgkins' i then did a more conclusive incision biopsy and the results confirmed it. nodular sclerosis hodgkin's lymphoma. i walked out of the hospital holding chris' hand and said "so this is what it's like to have cancer"
and here we are.
i have decided to write this blog not only to keep friends and loved ones updated on my treatment and experiences on this journey, but as a personal journal for myself. please feel free to leave comments, words of encouragement are always accepted, and if you just want to read that's fine too.
but i didn't have a big reaction on the outside. i've never really been big on emotions, some might see this as bitchy, snobby, maybe strong, i dont know. i've just never been one to like cry at commercials, not big into hugs, any invasion of personal space really, i always get uncomfortable when my fiance makes some big romantic gesture that i know most girls long for, hell, when he proposed my first reaction was "i think i'm going to throw up" that's just me.
maybe that's where i should start. me. most of you know me because i have either shared this link with you, or a friend of a friend sent this, but for those randoms out there in cyber space, let me catch you up.
my name is jenn, i am a perfectly healthy, (well, other than the cancer) 27 year old female. i grew up in stoughton, i am still friends with people i went to high school with and i like it, i think i'm pretty funny. i love my family. i have an older sister and brother, my mom is one of the strongest women i know, she's a little nutty but i like it, and my stepdad david should have his own reality show. oh and my mom has a pug baxter who is currently suffering from Lyme disease (it's been a rough month for my mom and her babies) i live with my amazing fiance chris in a lovely apartment in wrentham. we met in college and he is my best friend, we have been engaged since august 2009 and were planning an october 2010 wedding. i like to workout, shop, drink wine, try new restaurants, cook, clean, go on facebook, etc. pretty normal life.
in march 2010, i was doing my usual tuesday night routine, came home from work, got into my pajamas, washed my face, made dinner, cleaned up and sat down to watch the newest episode of american idol. there must have been a bruins game on or something because chris was in the bedroom. i was randomly rubbing my neck, and felt something weird, like a lump or something. usually i dont get too concerned with things like this, but something made me alarmed and i went in and had chris feel it. he said he didnt think it was anything, we all have weird things in our neck. i kind of forgot about it for a week or so and then one friday night i was out to dinner with my dear friends jenn and christy jenn happens to be a registered nurse and i asked her to feel the lump. she felt it, compared it to the other side of my neck and just said 'i would go to the doctor' ummm what? so of course for the next two days of the weekend i was imagining all the things it could be, a goiter, a tumor, a bug bite, who knows. all i knew was i was calling my doctor on monday and getting the first appointment available.
monday came, saw my lovely PCP, she said i think i will send you for a CT scan on wednesday. went for my scan, she called that day and said i want you to go in for a needle biopsy. thursday i met with the surgeon in his office, he did the needle biopsy and when i asked what he thought it might be he said 'ya, looks like hodgkins' i then did a more conclusive incision biopsy and the results confirmed it. nodular sclerosis hodgkin's lymphoma. i walked out of the hospital holding chris' hand and said "so this is what it's like to have cancer"
and here we are.
i have decided to write this blog not only to keep friends and loved ones updated on my treatment and experiences on this journey, but as a personal journal for myself. please feel free to leave comments, words of encouragement are always accepted, and if you just want to read that's fine too.
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