Sisters
Jug Day 2010
Thursday, October 29, 2009
Be inspired
In session today a foster father told the girl who told a false allegation on him, nearly risked his ability to be a foster parent, jail time, his job, his reputation...that he will risk it all again because she is his daughter, she is loved, she is worith the risk, and he is her father. I was in awe. Then as I was settling into my vice tonight, my Greys Anatomy fix, a patient had a great line: "When you are frightened today, be inspired". I have had many a frightened day in the past year; inspiration was just getting up on some days, I am more frightened now as I look back than I was then when it was all happening...I want to be inspired. That foster dad was inspired, far from fearless. Maybe I can be too - inspired, though I am far from fearless.
Sunday, October 18, 2009
Pumkin Pickin
Days like today prove things can just be good and right sometimes...the kids were great, weather was great, the only downside is we can't do it everyday!
Saturday, October 17, 2009
Onward...
Well this is where the cancer blog ends and the what the hell do I do now that treatment is over blog begins...this one's for me. I know I want things in my life to be different, but I don't know how, or what to do about it. I know I am blessed and lucky, but that I'm not as happy as I think I could be. I don't think I am done with this cancer thing by any stretch - don't get me wrong, I think the cancer is out of me, but not out of my psyche - that I still have to work on. I already feel the pink ribbon fading, and the responsibility but yet the aversion to getting back to the way things were - the way things were is how I ended up in this predicament in the first place. I definately have not yet figured out what I will do with this new lot in life, this second chance. Give me time, it'll come to me at some point!
Oct 12, 2009
Monday, October 12, 2009 9:31 AM, EDT
Jug day was a huge success! Needless to say, the Komen race was overwhelming, and big, and happy, and fun...our little jug team raised somewhere around $1600, not bad for a first go at this!
I think one of the more emotional elements from that day for me was the number of people, number of survivors, and number of people walking for those who didn't survive the disease. Too many....across the board...too many...it was hard to look around and not think, oh my God, this is how big this disease is...this is what I've survived, and this is what I have to survive for...only cried once... :)
The finish line was a blast, metaphorically, and literally...anyone who makes it through chemo, radiation and surgery should get a medal and some hubbub, dammit! Eileen's brunch was great - she went overboard, b/c that is what she does, and it was yummy, fun, overwhelming [I know that word keeps popping out, but it seems to be the only one that suits] and a fantastic start to a new year for me...it marks the time for my cancer year to be over, and my survivor's years to begin. Never hurts to mark such an occasion with friends, family, sweets, flowers, and Bellinis!
Here are some pictures from the day, if you are a facebooker, find me there too!
http://picasaweb.google.com/Pkwolfie/JugDay2009?feat=directlink
Talk to you soon!
Jug day was a huge success! Needless to say, the Komen race was overwhelming, and big, and happy, and fun...our little jug team raised somewhere around $1600, not bad for a first go at this!
I think one of the more emotional elements from that day for me was the number of people, number of survivors, and number of people walking for those who didn't survive the disease. Too many....across the board...too many...it was hard to look around and not think, oh my God, this is how big this disease is...this is what I've survived, and this is what I have to survive for...only cried once... :)
The finish line was a blast, metaphorically, and literally...anyone who makes it through chemo, radiation and surgery should get a medal and some hubbub, dammit! Eileen's brunch was great - she went overboard, b/c that is what she does, and it was yummy, fun, overwhelming [I know that word keeps popping out, but it seems to be the only one that suits] and a fantastic start to a new year for me...it marks the time for my cancer year to be over, and my survivor's years to begin. Never hurts to mark such an occasion with friends, family, sweets, flowers, and Bellinis!
Here are some pictures from the day, if you are a facebooker, find me there too!
http://picasaweb.google.com/Pkwolfie/JugDay2009?feat=directlink
Talk to you soon!
Sept 18 - Oct 7 2009
Friday, September 18, 2009 1:45 PM, EDT
My co-workers took me out to lunch today to celebrate the end of treatment, and gave me a gold shamrock with this poem on it:
One Leaf is for Hope
And one is for Faith
And one is for Love, you know
And God put another in for Luck!
Doesn't get more fitting, I'd say! I'm a bit of a dork, I was totally surprised, even when I saw them sitting there, and it was a glaring clue that I haven't let myself accept that treatment is over. Strange I know, but when every waking moment, and most of the sleeping ones, are consumed with cancer, and killing cancer, and fearing cancer, and fighting cancer...I guess it takes a little time to wind down from it all. I am still not even used to just looking more normal; a woman I met said to me yesterday, "I love your haircut" and just like in Atlanta it was great to be percieved as if I had chosen my look, instead of my head being one big chemical catastophe. For someone who likes predictiability, and security, and to be in control, this whole transformation thing is quite a trip. Now I get to re-start Tamoxifen again, so I'll get to add hormone rushes, hot flashes and old-lady aches for the next few months until it wears off, so if I turn into a blithering idiot [moreso than usual] cut me some slack and cross your fingers that the side effects wear off soon!!
On another fun note, the Komen Race is coming soon, let me know if you are meeting us there, if you are coming to brunch [post race Bellinis!] and if you want in on the T-Shirts - Leener is still working on the design, so it's a surpise so far! Take care all, have a great weekend, thanks again for always holding me up.
Tuesday, September 29, 2009 4:26 PM, EDT
My Kroger has turned Pink. Everything is pink ribbon. Not sure how I feel about that; you read other people's cancer blogs and there is alot of controversy about the whole pinktober thing - many are pleased with the publicity and focus, after all, research probably would not be where it is without all the hubbub. Many are not so thrilled, feeling that marketing departments are profiting off the disease but putting a ribbon on their products during this month [or possibly they are just not handling their recovery well and hate being face to face with that ribbon everyday for a month...]. I, of course, am in a stranger place about it. I was getting my groceries in my usual frugal manner, and each time I did not buy the brand name pink ribbon product I felt like I was being a traitor by not supporting my own cause and purchasing pink products. Then of course reality set in and I realized that I am paying plenty to my own cause via medical bills so who the hell cares if I don't buy the pink ribbon dish soap and pink ribbon razors? The most appealing schtick I saw that I would possibly buy into was the "buy 2 packages of pink M&M's and get a pink flower bouquet free". That sounded more appropriate - give the survivor a bucket load of chocolate and some pink carnations to help her feel better about life! Maybe it's me, maybe it's Tamoxifen, but that one gave me a chuckle. I know, my mind can be a scary place to visit. Hopefully as October comes I'll embrace my ribbon wearing status and not be so guilt ridden that my cart isn't filled with pink promotional items - my frugal sensibilities won out last night!
Less than two weeks for the Komen Walk and the "Murphy Girl's brunch" - I'll post more info when we decide on a meeting place...Go Jugs!
Wednesday, October 7, 2009 3:05 PM, EDT
Komen Race Day Update!!
I have been informed that my original plan to meet was a pretty bad one due to the number of people at the event, so here we go with a more specific location: we are going to meet on Witherspoon, East of the start line, which means closer to Preston St where the Folk Art [large colorful animals, chickens I think] is – the folk art is supposed to be hard to miss.
For those who signed up as team members, I have your packets [St. Joe’s folks I’ll have them Thursday and Friday in my office] with the Komen T-Shirts. For those who signed up for Irish Jugs Shirts my hope is to have them beforehand too, otherwise we’ll get them to you race day as well. Don’t forget the post-race brunch/party at Eileen’s house around 11ish...
Thanks a bunch, our novice little team raised over $1300 to find a cure…a very cool way to come out of treatment, and your participation means a lot as I celebrate my first Pinktober as a survivor. See you Saturday!
On another note - these updates and entries seem to be winding down as life gets back to normal, or my new normal, or whatever - but I broke down and joined Facebook to fill the void...cross over and come visit me there, or God forbid keep in touch directly! I'll keep the Caringbridge open for a while, and will post pictures of race day, and after that, we'll see how it goes. Take care all!
My co-workers took me out to lunch today to celebrate the end of treatment, and gave me a gold shamrock with this poem on it:
One Leaf is for Hope
And one is for Faith
And one is for Love, you know
And God put another in for Luck!
Doesn't get more fitting, I'd say! I'm a bit of a dork, I was totally surprised, even when I saw them sitting there, and it was a glaring clue that I haven't let myself accept that treatment is over. Strange I know, but when every waking moment, and most of the sleeping ones, are consumed with cancer, and killing cancer, and fearing cancer, and fighting cancer...I guess it takes a little time to wind down from it all. I am still not even used to just looking more normal; a woman I met said to me yesterday, "I love your haircut" and just like in Atlanta it was great to be percieved as if I had chosen my look, instead of my head being one big chemical catastophe. For someone who likes predictiability, and security, and to be in control, this whole transformation thing is quite a trip. Now I get to re-start Tamoxifen again, so I'll get to add hormone rushes, hot flashes and old-lady aches for the next few months until it wears off, so if I turn into a blithering idiot [moreso than usual] cut me some slack and cross your fingers that the side effects wear off soon!!
On another fun note, the Komen Race is coming soon, let me know if you are meeting us there, if you are coming to brunch [post race Bellinis!] and if you want in on the T-Shirts - Leener is still working on the design, so it's a surpise so far! Take care all, have a great weekend, thanks again for always holding me up.
Tuesday, September 29, 2009 4:26 PM, EDT
My Kroger has turned Pink. Everything is pink ribbon. Not sure how I feel about that; you read other people's cancer blogs and there is alot of controversy about the whole pinktober thing - many are pleased with the publicity and focus, after all, research probably would not be where it is without all the hubbub. Many are not so thrilled, feeling that marketing departments are profiting off the disease but putting a ribbon on their products during this month [or possibly they are just not handling their recovery well and hate being face to face with that ribbon everyday for a month...]. I, of course, am in a stranger place about it. I was getting my groceries in my usual frugal manner, and each time I did not buy the brand name pink ribbon product I felt like I was being a traitor by not supporting my own cause and purchasing pink products. Then of course reality set in and I realized that I am paying plenty to my own cause via medical bills so who the hell cares if I don't buy the pink ribbon dish soap and pink ribbon razors? The most appealing schtick I saw that I would possibly buy into was the "buy 2 packages of pink M&M's and get a pink flower bouquet free". That sounded more appropriate - give the survivor a bucket load of chocolate and some pink carnations to help her feel better about life! Maybe it's me, maybe it's Tamoxifen, but that one gave me a chuckle. I know, my mind can be a scary place to visit. Hopefully as October comes I'll embrace my ribbon wearing status and not be so guilt ridden that my cart isn't filled with pink promotional items - my frugal sensibilities won out last night!
Less than two weeks for the Komen Walk and the "Murphy Girl's brunch" - I'll post more info when we decide on a meeting place...Go Jugs!
Wednesday, October 7, 2009 3:05 PM, EDT
Komen Race Day Update!!
I have been informed that my original plan to meet was a pretty bad one due to the number of people at the event, so here we go with a more specific location: we are going to meet on Witherspoon, East of the start line, which means closer to Preston St where the Folk Art [large colorful animals, chickens I think] is – the folk art is supposed to be hard to miss.
For those who signed up as team members, I have your packets [St. Joe’s folks I’ll have them Thursday and Friday in my office] with the Komen T-Shirts. For those who signed up for Irish Jugs Shirts my hope is to have them beforehand too, otherwise we’ll get them to you race day as well. Don’t forget the post-race brunch/party at Eileen’s house around 11ish...
Thanks a bunch, our novice little team raised over $1300 to find a cure…a very cool way to come out of treatment, and your participation means a lot as I celebrate my first Pinktober as a survivor. See you Saturday!
On another note - these updates and entries seem to be winding down as life gets back to normal, or my new normal, or whatever - but I broke down and joined Facebook to fill the void...cross over and come visit me there, or God forbid keep in touch directly! I'll keep the Caringbridge open for a while, and will post pictures of race day, and after that, we'll see how it goes. Take care all!
Aug 20 Sept 9 2009
Thursday, August 20, 2009 1:31 PM, EDT
Today is officially no more hats and scarves day! There is enough fuzz on my head to give the illusion that it is not as big as a bowling ball, enough that Casey isn't traumatized at the thought of me picking him up from school au natural, and it is too hot and humid for headgear. So there it is. It is comical getting the double takes today; those that are comfortable respond with a "Hey! No more scarves!" and those that are not comfortable blurt out some uncomfortable "Hi...How are you?!" when I've already passed them three times in the building today. Amazing what a head of hair means to women. Don't get me wrong, I'll be thrilled when I can more liberally choose my hair color and have enough hair for a funkier do, but am definately not looking for the return of long flowing hair, short hair has its perks!! And anything beats having to find headwear that matches the outfit when you are running late in the morning...
I am still on my radiation hiatus, trying to heal up for at most 11 more rounds I think. My Rads MD is going to change the way that they are hitting me with the beams in the hopes of keeping my skin in tact - we'll see.
I saw a cool bumper sticker today, on a little granola subaru with "save the earth type" stickers on it, driving through Clifton where I work [Clifton has many granola residents!]. It said "The definition of Life is to Live It". It made me smile.
Have a good weekend - support the Irish Jugs!
www.komenlouisville.org
Tuesday, September 1, 2009 8:53 AM, EDT
In theory, I will be done with radiation next Thursday. I finish regular treatments this week, and then three final "boosts" next week. After that, it's back to consults and healing time, back on Tamoxifen, and wait to repeat scans probably in December to be sure "all is clear". At least I'll be done with treatments by the Komen Race, makes it a nice milestone marker! I'm looking forward to not going to the MD everyday, maybe someday a day will even go by where I don't have something about cancer running around in my head...
Just came back from a training in Atlanta for work, and I must say, people down there are much more progressive about the hair thing! I Nigerian man in the hotel said to me "Love your haircut" while walking past, and a waiter at the Hard Rock with dreadlocks longer than my eighties hair came up to me and said "your hair rocks!". I'll have to study up on ethnocentric issues in urban areas because clearly there is something cool about a tall white chick with shaved down hair...it was definately a refreshing approach!
Have a good week, I'll check in soon!
Wednesday, September 9, 2009 11:47 AM, EDT
One more treatment! Tomorrow is my last radiation...so hopefully what it takes to cure cancer is 10 months of mindbending stress, 6 months of chemo, surgery, 10 weeks of radiation, no hair for 7 months, 9 months of voodoo [thanks Cynthia!], mysterious rashes, medical claims that I just stopped counting, weekly/daily/monthly all the time MD appontments, crying on the sofa watching Greys Anatomy and laughing on the sofa watching Operation Repo [among other fine selections of crap TV], and too many prayers, well wishes, mojo pushes, favors, babysitting emergencies, tolerant bosses, hugs, jokes, really bad cancer jokes, house cleanings, dinners, desserts, cocktails, drugs...[wooops - that was starting to seem really bad!] to count. Thanks to all who have followed along and contributed to the madness that is life with cancer. We made it to the end of treatment!
We'll celebrate at the Komen walk! Take care all - see you soon!
Today is officially no more hats and scarves day! There is enough fuzz on my head to give the illusion that it is not as big as a bowling ball, enough that Casey isn't traumatized at the thought of me picking him up from school au natural, and it is too hot and humid for headgear. So there it is. It is comical getting the double takes today; those that are comfortable respond with a "Hey! No more scarves!" and those that are not comfortable blurt out some uncomfortable "Hi...How are you?!" when I've already passed them three times in the building today. Amazing what a head of hair means to women. Don't get me wrong, I'll be thrilled when I can more liberally choose my hair color and have enough hair for a funkier do, but am definately not looking for the return of long flowing hair, short hair has its perks!! And anything beats having to find headwear that matches the outfit when you are running late in the morning...
I am still on my radiation hiatus, trying to heal up for at most 11 more rounds I think. My Rads MD is going to change the way that they are hitting me with the beams in the hopes of keeping my skin in tact - we'll see.
I saw a cool bumper sticker today, on a little granola subaru with "save the earth type" stickers on it, driving through Clifton where I work [Clifton has many granola residents!]. It said "The definition of Life is to Live It". It made me smile.
Have a good weekend - support the Irish Jugs!
www.komenlouisville.org
Tuesday, September 1, 2009 8:53 AM, EDT
In theory, I will be done with radiation next Thursday. I finish regular treatments this week, and then three final "boosts" next week. After that, it's back to consults and healing time, back on Tamoxifen, and wait to repeat scans probably in December to be sure "all is clear". At least I'll be done with treatments by the Komen Race, makes it a nice milestone marker! I'm looking forward to not going to the MD everyday, maybe someday a day will even go by where I don't have something about cancer running around in my head...
Just came back from a training in Atlanta for work, and I must say, people down there are much more progressive about the hair thing! I Nigerian man in the hotel said to me "Love your haircut" while walking past, and a waiter at the Hard Rock with dreadlocks longer than my eighties hair came up to me and said "your hair rocks!". I'll have to study up on ethnocentric issues in urban areas because clearly there is something cool about a tall white chick with shaved down hair...it was definately a refreshing approach!
Have a good week, I'll check in soon!
Wednesday, September 9, 2009 11:47 AM, EDT
One more treatment! Tomorrow is my last radiation...so hopefully what it takes to cure cancer is 10 months of mindbending stress, 6 months of chemo, surgery, 10 weeks of radiation, no hair for 7 months, 9 months of voodoo [thanks Cynthia!], mysterious rashes, medical claims that I just stopped counting, weekly/daily/monthly all the time MD appontments, crying on the sofa watching Greys Anatomy and laughing on the sofa watching Operation Repo [among other fine selections of crap TV], and too many prayers, well wishes, mojo pushes, favors, babysitting emergencies, tolerant bosses, hugs, jokes, really bad cancer jokes, house cleanings, dinners, desserts, cocktails, drugs...[wooops - that was starting to seem really bad!] to count. Thanks to all who have followed along and contributed to the madness that is life with cancer. We made it to the end of treatment!
We'll celebrate at the Komen walk! Take care all - see you soon!
July 31 - Aug 14 2009
Friday, July 31, 2009 8:09 PM, EDT
Not alot going on this week treatment wise - I am back in radiation, we'll just have to see how my skin holds up. My hair is trying to come in... sssslllloooooooooooowwwwlllllyyyy. Hopefully I'll have a punked out buzz cut before too long. Work is nuts, but it usually is at the end of the month...paperwork was never my strong point, and Lord knows I put it off as long as possible!! Can't believe school is about to start, Casey is going into second grade, and Logie enters his 3 year old room in a week. Normally I'd say something hokie like "Where did the time go?" - but I know full well where it went - in my car, to Dr.'s offices, work, dropping off and picking up kids, karate, back to Dr. 's offices etc...The school year might actually slow things for a minute. Never mind, that was a brief hallucination. I know things will stay nuts for awhile.
Speaking of nuts - I need to give a shout out to "High on the Hill" for her endurance and general super mojo powered spiritedness. Loved the cards, loved the pictures, love the fact that you are always a cheerleader. Now don't anyone be offended, but handwritten cards and great pictures of your kid deserves a shout out! Hell, I don't manage to communicate past emails and texts these days.
One last thing - mark your calendars - 10/10/09 is this years Susan G Komen Race for the Cure here in Louisville, I'll be putting together a team soon for anyone interested - and true to form, I'll email the details. ;) Have a great weekend!
Tuesday, August 11, 2009 5:15 PM, EDT
Hopefully the fact that I am journalling less here is just a sign of things calming down, there's just not as much to say that hasn't been said...or it could be that I've been too busy to take the time to do it!! Either way, I'll take normalcy however I can get it. Cancer wise, not much new, the quote from my radiation MD this week was "We are going to try to push through this week and then you are getting another break" which translates as "your skin is getting even more pissed and we need to quit for a minute before your boob explodes from the heat". OK, maybe not a direct translation, but that's how I hear it. Quite frankly we are taking bets as to whether I even make it through the week. This 6 1/2 week radiation process may take more like 12 to get through...still better than chemo, life is just normal enough for this to get really annoying now.
The kids are great - Casey starts second grade, and Logie started his new room this week - both getting too big too fast - remarkable how they have made it through this year relatively unscathed. I am so looking forward to Casey having a normal school year, not worrying about me being bald, not worrying if his friends will make fun of his pictures or not [he drew family pictures acucrately, with me bald or spiky - was pretty cute to me!!], not me missing all his parties because of bad blood counts...yeah for second grade! I never mention Chris very much here, this has kind of been my thing, he is super crazy and stressed and hopefully excited about his store's new building finally being done - nothing like trying to grow a car lot during a recession to keep your blood pressure perpetually elevated!
I'll do the Race for the Cure stuff soon - trying to come up with a name for the team [any suggestions?], but I'll not wait too much longer for the brain storm to hit and then I'll go ahead and start the process anyway...will be a good milestone I think. Have a good week, think COOL thoughts [though Burn Baby Burn seems to stick in my head for various reasons these days!] I'll check in agin soon!
Friday, August 14, 2009 3:23 PM, EDT
My tata is toast...so needless to say I am on another radiation break b/c these Irish Jugs are not thrilled with the radiation beams being pointed their way...fortunately my underarm is still a bit numb from surgery, or it would really really suck, b/c that area is fried too. Don't get me wrong, could be way worse, my radiation MD sees me every other day to monitor it so my skin stays in tact, I've heard horror stories of women being pushed on through to the end. I'll take slow and easy, thank you very much!
On to more fun subjects - the Komen race. For those of you who I have emails you should have gotten an invite, for those I missed here are the basics:
Race for the Cure 10/10/09 @ Waterfront Park.
http://www.komenlouisville.org/site/PageServer?pagename=Race_Homepage
Team Name: Irish Jugs [thanks Leener!!] or you can search for the team under my name.
This is a 5K run OR walk, OR 1 mile run or walk - so don't be freaked out by the word "race". It is a big hoopla festival celebration of living and surviving and finding a cure, and a nice milestone as I finish treatment with my posse in tow...you can offically register and join our team, donate/sponsor in my name, or just show up. Eileen will also be hosting a brunch afterwards to continue the fun, and celebrate the power of what family, friends, faith, well wishers, and mojo pushers can do...she keeps trying to make me cry with these gestures she comes up with, this one just might do it!
Not alot going on this week treatment wise - I am back in radiation, we'll just have to see how my skin holds up. My hair is trying to come in... sssslllloooooooooooowwwwlllllyyyy. Hopefully I'll have a punked out buzz cut before too long. Work is nuts, but it usually is at the end of the month...paperwork was never my strong point, and Lord knows I put it off as long as possible!! Can't believe school is about to start, Casey is going into second grade, and Logie enters his 3 year old room in a week. Normally I'd say something hokie like "Where did the time go?" - but I know full well where it went - in my car, to Dr.'s offices, work, dropping off and picking up kids, karate, back to Dr. 's offices etc...The school year might actually slow things for a minute. Never mind, that was a brief hallucination. I know things will stay nuts for awhile.
Speaking of nuts - I need to give a shout out to "High on the Hill" for her endurance and general super mojo powered spiritedness. Loved the cards, loved the pictures, love the fact that you are always a cheerleader. Now don't anyone be offended, but handwritten cards and great pictures of your kid deserves a shout out! Hell, I don't manage to communicate past emails and texts these days.
One last thing - mark your calendars - 10/10/09 is this years Susan G Komen Race for the Cure here in Louisville, I'll be putting together a team soon for anyone interested - and true to form, I'll email the details. ;) Have a great weekend!
Tuesday, August 11, 2009 5:15 PM, EDT
Hopefully the fact that I am journalling less here is just a sign of things calming down, there's just not as much to say that hasn't been said...or it could be that I've been too busy to take the time to do it!! Either way, I'll take normalcy however I can get it. Cancer wise, not much new, the quote from my radiation MD this week was "We are going to try to push through this week and then you are getting another break" which translates as "your skin is getting even more pissed and we need to quit for a minute before your boob explodes from the heat". OK, maybe not a direct translation, but that's how I hear it. Quite frankly we are taking bets as to whether I even make it through the week. This 6 1/2 week radiation process may take more like 12 to get through...still better than chemo, life is just normal enough for this to get really annoying now.
The kids are great - Casey starts second grade, and Logie started his new room this week - both getting too big too fast - remarkable how they have made it through this year relatively unscathed. I am so looking forward to Casey having a normal school year, not worrying about me being bald, not worrying if his friends will make fun of his pictures or not [he drew family pictures acucrately, with me bald or spiky - was pretty cute to me!!], not me missing all his parties because of bad blood counts...yeah for second grade! I never mention Chris very much here, this has kind of been my thing, he is super crazy and stressed and hopefully excited about his store's new building finally being done - nothing like trying to grow a car lot during a recession to keep your blood pressure perpetually elevated!
I'll do the Race for the Cure stuff soon - trying to come up with a name for the team [any suggestions?], but I'll not wait too much longer for the brain storm to hit and then I'll go ahead and start the process anyway...will be a good milestone I think. Have a good week, think COOL thoughts [though Burn Baby Burn seems to stick in my head for various reasons these days!] I'll check in agin soon!
Friday, August 14, 2009 3:23 PM, EDT
My tata is toast...so needless to say I am on another radiation break b/c these Irish Jugs are not thrilled with the radiation beams being pointed their way...fortunately my underarm is still a bit numb from surgery, or it would really really suck, b/c that area is fried too. Don't get me wrong, could be way worse, my radiation MD sees me every other day to monitor it so my skin stays in tact, I've heard horror stories of women being pushed on through to the end. I'll take slow and easy, thank you very much!
On to more fun subjects - the Komen race. For those of you who I have emails you should have gotten an invite, for those I missed here are the basics:
Race for the Cure 10/10/09 @ Waterfront Park.
http://www.komenlouisville.org/site/PageServer?pagename=Race_Homepage
Team Name: Irish Jugs [thanks Leener!!] or you can search for the team under my name.
This is a 5K run OR walk, OR 1 mile run or walk - so don't be freaked out by the word "race". It is a big hoopla festival celebration of living and surviving and finding a cure, and a nice milestone as I finish treatment with my posse in tow...you can offically register and join our team, donate/sponsor in my name, or just show up. Eileen will also be hosting a brunch afterwards to continue the fun, and celebrate the power of what family, friends, faith, well wishers, and mojo pushers can do...she keeps trying to make me cry with these gestures she comes up with, this one just might do it!
July 13 - 24 2009
Monday, July 13, 2009 10:28 PM, EDT
News for me is fine, but not for Cody - so sensitive souls beware...
Radiation is a hassle, another bizarre subculture in the world of oncology. Of course those who work there are a special breed, and generally great people. The process is quick, my skin is hanging in there [we thought it wasn't, but it is just a bit swollen still from surgery...google "lymphodema" if you really are curious, mine is mild...] So it's keep up with the daily grind and hope the side effects are late and mild...till then I feel nearly human, I just crap out earlier in the evening than I would like...that may have more to do with trying to keep up with the boys and keep Logan from trashing the house!
As for Cody, he took a serious turn for the worse last week. He contracted MRSA and meningities [a fungal version] and the cancer blasts are rampant in his blood. His body simply cannot take what is happening. It turns out he has the most aggressive form of ALL, and a chromosome that is the most ill fitted to recover from it. He had a stroke and his brain is filled with blood, they took him off life support Saturday night. Damned thing is the kid is still hanging on - that's just like him, to be stubborn enough to hang on a bit longer. I wonder enough why I got picked for this disease at this stage of my life [a good stage, by the way!!], I certainly will never be able to get my head around why kids must go through it. Damned disease doesn't give a crap who it gets, those of us left are to live, learn, and keep searching for a cure in their honor I suppose. Kick in some prayers for Cody and his mom - not sure how she will fare when all is said and done; she pulled it together for him, not sure what she'll do without him. Damn this disease.
I feel badly ending on that note - but days like today just sit heavily. Time to turn in and keep the fight going tomorrow, for me, my kids, and my "work kids". We're all worth it.
Wednesday, July 22, 2009 4:33 PM, EDT
A sad Cody update...
Cody died this morning. I got the phone call when I was leaving a court hearing to head to my daily radiation. I guess he finally decided it was the right time to go - this rainy day seems an appropriate choice. People keep asking me how I'm doing, as if his death makes my cancer scarier or my cancer makes his death sadder for me- but really neither is the case. His death is sad because no child deserves what he went through, nor does his mother and sister deserve the grief they will hold in their hearts now. Cancer just sucks - it's a wicked disease, simple as that. I guess I'm not so graceful accepting my identity as a survivor yet - treatment keeps your fists up in a battle stance fighting to feel good or normal again, with the fact that you have the disease always lurking around in your brain. I'm sure someday I'll trade in my battle sheild for a survivor's ribbon...but today, I like many others, battle on.
Fortunately as I was coming back into the office with Cody on my mind, I peeked in the cafeteria to see Logan's face covered in sloppy joe sauce while he was two fisting this apparently really good lunch. No better sign that life does go on, and for every tragedy in this world there is plenty of beauty, too. Just be sure to keep an eye out for it.
Friday, July 24, 2009 9:05 AM, EDT
Well I have officially managed to have all my doctors tell me "I've never seen that happen before". The other night I broke out into a lovely bumpy hive rash that basically spread from neck to toe, with my radiated area bright red and fiercly itchy. So when I saw my Radiation MD yesterday morning, and she saw how far and fast the rash spread, the famous words out of her mouth kept my standing as a medical enigma in tact. Apparently my skin is just plain pissed, and wants me to acknowledge it's importance as a vital organ. So it revolted against the combination of tamoxifen and radiation. [She said every drug I have been on has harsh skin effects, so now my skin is just shot...] I am now off tamoxifen until after radiation, and off radiation for a week for my skin to regroup. Though it will be nice to not be running to the MD every day, it was very disheartening to stop treatment just weeks away from being done. [To give a clue how intense the hives were, I had a total of 175mg of benadryl in the last 18 hours, and I was not passed out on the floor...you can still see the shadows from the hives this morning] Feeling much better today...what doesn't kill you makes you stronger, or gives you a fiercly itching freakish looking rash so that you stop pushing your luck. The way I see it, I should be able to move mountains by the time this is done!
News for me is fine, but not for Cody - so sensitive souls beware...
Radiation is a hassle, another bizarre subculture in the world of oncology. Of course those who work there are a special breed, and generally great people. The process is quick, my skin is hanging in there [we thought it wasn't, but it is just a bit swollen still from surgery...google "lymphodema" if you really are curious, mine is mild...] So it's keep up with the daily grind and hope the side effects are late and mild...till then I feel nearly human, I just crap out earlier in the evening than I would like...that may have more to do with trying to keep up with the boys and keep Logan from trashing the house!
As for Cody, he took a serious turn for the worse last week. He contracted MRSA and meningities [a fungal version] and the cancer blasts are rampant in his blood. His body simply cannot take what is happening. It turns out he has the most aggressive form of ALL, and a chromosome that is the most ill fitted to recover from it. He had a stroke and his brain is filled with blood, they took him off life support Saturday night. Damned thing is the kid is still hanging on - that's just like him, to be stubborn enough to hang on a bit longer. I wonder enough why I got picked for this disease at this stage of my life [a good stage, by the way!!], I certainly will never be able to get my head around why kids must go through it. Damned disease doesn't give a crap who it gets, those of us left are to live, learn, and keep searching for a cure in their honor I suppose. Kick in some prayers for Cody and his mom - not sure how she will fare when all is said and done; she pulled it together for him, not sure what she'll do without him. Damn this disease.
I feel badly ending on that note - but days like today just sit heavily. Time to turn in and keep the fight going tomorrow, for me, my kids, and my "work kids". We're all worth it.
Wednesday, July 22, 2009 4:33 PM, EDT
A sad Cody update...
Cody died this morning. I got the phone call when I was leaving a court hearing to head to my daily radiation. I guess he finally decided it was the right time to go - this rainy day seems an appropriate choice. People keep asking me how I'm doing, as if his death makes my cancer scarier or my cancer makes his death sadder for me- but really neither is the case. His death is sad because no child deserves what he went through, nor does his mother and sister deserve the grief they will hold in their hearts now. Cancer just sucks - it's a wicked disease, simple as that. I guess I'm not so graceful accepting my identity as a survivor yet - treatment keeps your fists up in a battle stance fighting to feel good or normal again, with the fact that you have the disease always lurking around in your brain. I'm sure someday I'll trade in my battle sheild for a survivor's ribbon...but today, I like many others, battle on.
Fortunately as I was coming back into the office with Cody on my mind, I peeked in the cafeteria to see Logan's face covered in sloppy joe sauce while he was two fisting this apparently really good lunch. No better sign that life does go on, and for every tragedy in this world there is plenty of beauty, too. Just be sure to keep an eye out for it.
Friday, July 24, 2009 9:05 AM, EDT
Well I have officially managed to have all my doctors tell me "I've never seen that happen before". The other night I broke out into a lovely bumpy hive rash that basically spread from neck to toe, with my radiated area bright red and fiercly itchy. So when I saw my Radiation MD yesterday morning, and she saw how far and fast the rash spread, the famous words out of her mouth kept my standing as a medical enigma in tact. Apparently my skin is just plain pissed, and wants me to acknowledge it's importance as a vital organ. So it revolted against the combination of tamoxifen and radiation. [She said every drug I have been on has harsh skin effects, so now my skin is just shot...] I am now off tamoxifen until after radiation, and off radiation for a week for my skin to regroup. Though it will be nice to not be running to the MD every day, it was very disheartening to stop treatment just weeks away from being done. [To give a clue how intense the hives were, I had a total of 175mg of benadryl in the last 18 hours, and I was not passed out on the floor...you can still see the shadows from the hives this morning] Feeling much better today...what doesn't kill you makes you stronger, or gives you a fiercly itching freakish looking rash so that you stop pushing your luck. The way I see it, I should be able to move mountains by the time this is done!
June 26 - July 8 2009
Friday, June 26, 2009 9:14 AM, EDT
A few years ago there was a boy I worked with at Seven Counties; I worked with he and his mom and a foster family for about 2 years. He had Leukemia, and had to be pulled into foster care due to his mother's alcohol/drug issues and inability to maintain his care, especially his high medical needs. He got better, and eventually went back to his mother [against our wishes]. Ironically, he is coming back to our foster care program, I will again be his therapist, and he again is fighting cancer - he has relapsed, and his prognosis is not great. I've thought about him often - he taught me about ports, and chemo, and blood counts, and survival. I pray he can win this fight again, and feel so sad for him but so honored to get to be one of the ones to help him through it again - Lord knows I come to it with a different perspective now. I have said a thousand times, kids are stonger than us grown ups, and they have alot to teach us about life. Kick in a prayer for Cody as we try to beat his cancer demons, too.
As far as me, I'm doing good - I start radiation on the 7th, so I get another week off to keep healing before that starts. I can taste food [and margaritas!] and take the kids swimming, and whatever...just waiting for my hair to grow back!! ;) Take care all, have a good weekend!
Thursday, July 2, 2009 8:47 AM, EDT
A typical conversation with Case [true story!]:
Casey: Mom, don't you have Breast Cancer?
Me: Yep, remember when we talked about that?
Casey: Yeah, but Jojo at CEP [summer camp] says that if you have breast cancer your boobie gets sucked in, and yours isn't sucked in, so I didn't think it was the same thing...
Me: I do have breast cancer, but tell Jojo that your boobie doesn't get sucked in, the doctors just have to fix it sometimes.
Casey: OK [back to playing his DS...]
Apparently no one explained to Jojo what a mastectomy really was - poor kid thinks the damed thing just got sucked back in!!
Another milestone, went back to Zumba last night [latin dance type aerobics, rather addictive] - I am quite the creampuff since I haven't been able to excercise since November! Don't get me wrong, you know I'm no athlete, but even though I've always been big there's an all new level of muscle mush when your activity level has been ground to a halt for 7 months! Regardless, it was fun, my face was more red than when I have a hot flash, and today I am sore -- mission accomplished!
Have a happy 4th everyone, swing by for our fireworks fiasco...I mean fiesta...the boys went overboard with the pyrotechnics this year, cross your fingers the rain holds off and come on by!
Wednesday, July 8, 2009 11:50 AM, EDT
Well radiation is going to be a test of my ability to schedule and focus around an annoying appointment in the middle of each day. You see, the "we'll work around your schedule" thing turned into, "we're really packed, and you need a consistent time, so can you do 11am?" So every day, in the middle of the day, I stop what I am doing to run over, get zapped, and run back to work to try to refocus. At some point you wonder who on earth came up with these hoops you have to go through to get cured - must I prove I really really want to be cancer free by going through 6 months of the chemo gauntlet, have my boob sliced up, and now a daily routine of stripping down for more strangers in the strange world of radiation oncology? I guess so, so I will. I know, I know, it could be worse, it could always be worse. But did I mention hair is growing back fairly rapidly everywhere EXCEPT ON MY HEAD?!?! I think the better I feel, and the more normal I start to feel, the more bitchy I get about these things...I must have been too tired to gripe about these tedious elements of treatment before . So when I gripe, don't worry that I am wearing down, it oculd quite possible be a sign that I am revving up!!
The 4th was fun despite the rain, we all had a good time despite the rain, and the big boys got to play with fire while drinking beer. What else could you want for a yard party?
A few years ago there was a boy I worked with at Seven Counties; I worked with he and his mom and a foster family for about 2 years. He had Leukemia, and had to be pulled into foster care due to his mother's alcohol/drug issues and inability to maintain his care, especially his high medical needs. He got better, and eventually went back to his mother [against our wishes]. Ironically, he is coming back to our foster care program, I will again be his therapist, and he again is fighting cancer - he has relapsed, and his prognosis is not great. I've thought about him often - he taught me about ports, and chemo, and blood counts, and survival. I pray he can win this fight again, and feel so sad for him but so honored to get to be one of the ones to help him through it again - Lord knows I come to it with a different perspective now. I have said a thousand times, kids are stonger than us grown ups, and they have alot to teach us about life. Kick in a prayer for Cody as we try to beat his cancer demons, too.
As far as me, I'm doing good - I start radiation on the 7th, so I get another week off to keep healing before that starts. I can taste food [and margaritas!] and take the kids swimming, and whatever...just waiting for my hair to grow back!! ;) Take care all, have a good weekend!
Thursday, July 2, 2009 8:47 AM, EDT
A typical conversation with Case [true story!]:
Casey: Mom, don't you have Breast Cancer?
Me: Yep, remember when we talked about that?
Casey: Yeah, but Jojo at CEP [summer camp] says that if you have breast cancer your boobie gets sucked in, and yours isn't sucked in, so I didn't think it was the same thing...
Me: I do have breast cancer, but tell Jojo that your boobie doesn't get sucked in, the doctors just have to fix it sometimes.
Casey: OK [back to playing his DS...]
Apparently no one explained to Jojo what a mastectomy really was - poor kid thinks the damed thing just got sucked back in!!
Another milestone, went back to Zumba last night [latin dance type aerobics, rather addictive] - I am quite the creampuff since I haven't been able to excercise since November! Don't get me wrong, you know I'm no athlete, but even though I've always been big there's an all new level of muscle mush when your activity level has been ground to a halt for 7 months! Regardless, it was fun, my face was more red than when I have a hot flash, and today I am sore -- mission accomplished!
Have a happy 4th everyone, swing by for our fireworks fiasco...I mean fiesta...the boys went overboard with the pyrotechnics this year, cross your fingers the rain holds off and come on by!
Wednesday, July 8, 2009 11:50 AM, EDT
Well radiation is going to be a test of my ability to schedule and focus around an annoying appointment in the middle of each day. You see, the "we'll work around your schedule" thing turned into, "we're really packed, and you need a consistent time, so can you do 11am?" So every day, in the middle of the day, I stop what I am doing to run over, get zapped, and run back to work to try to refocus. At some point you wonder who on earth came up with these hoops you have to go through to get cured - must I prove I really really want to be cancer free by going through 6 months of the chemo gauntlet, have my boob sliced up, and now a daily routine of stripping down for more strangers in the strange world of radiation oncology? I guess so, so I will. I know, I know, it could be worse, it could always be worse. But did I mention hair is growing back fairly rapidly everywhere EXCEPT ON MY HEAD?!?! I think the better I feel, and the more normal I start to feel, the more bitchy I get about these things...I must have been too tired to gripe about these tedious elements of treatment before . So when I gripe, don't worry that I am wearing down, it oculd quite possible be a sign that I am revving up!!
The 4th was fun despite the rain, we all had a good time despite the rain, and the big boys got to play with fire while drinking beer. What else could you want for a yard party?
June 10 - 18 2009
Wednesday, June 10, 2009 1:43 PM, EDT
Happy rainy hump day all - I never posted the rest of the story after I talked to my oncologist yesterday. I like my surgeon, but I like talking to my oncologist way better! He was pretty neutral about the 5 nodes [we knew it was there, and now they are gone], but very positive about the tumor, very positive about the fact that my CT scan came out clear [I was more worried about that than he was], and positive about the fact that a blood test revealed I am able to metabolize Tamoxfen effectively. [New research exposed that some people cannot metabolize this estrogen-stopping medication, which is a bad situation for them, as this is a key element needed to get to a long term cure.] I meet with the radiation oncologist tomorrow [who was awarded the physician of the year from the Amercian Cancer Society in Ky this past weekend, not a bad referral!] and we'll map out the radiation plan, probably to start in a few more weeks. I feel like I should have been whooping and hurraying, but all these steps lead to more of a "take a deep breath, and keep going" reaction from me if I am being really honest about it. I think as things slow down, and I try to figure out what normal life is again, there is this acceptance and reality that it will be a really long time before cancer is very far off my radar - don't get me wrong, I was relieved yesterday, just not as excited as I thought I would be, but not negative either. Hard to explain.
I will say, for those who know me well at all, a significant milestone was met the weekend before surgery - Chris and I took the kids to waterfront park and then ate out - I had a margarita and it tasted GOOOOOOOOOD! Though some things may change as normal gets re-established, some things my friends, like my affinity for a good margarita, will not! Maybe when we walk for Susan G Komen day in October, we'll celebrate with some yummy frozen green drink!
Monday, June 15, 2009 4:06 PM, EDT
I can seriously understand why Tikaani [my dog] pulled his drain out with his teeth. I am not far from that move myself. For the non-medical types, the drain I refer to is the tube sticking out of my side attached to a bulb at the end - sort of gross, not tremendously comfortable. Each day getting more and more irritating. My next chance for getting it out is Thursday, but right now I still have too much fluid. Fabulous. I would feel human if it wasn't for the @&#^#% drain!
Went back to work today - it went well - back to busy. My radiation oncology appt got bumped to this week, so I'll know what that routine will be like. We'll see if I can get another medical provider to say something like "wow, this is really unusual" or "this shouldn't be happening this way, I haven't seen this before" - since every other doc I have seen since being diagnosed has made such a comment. I must be special. As always, I'll let you know how it goes! Until then, cross your fingers I don't lose my mind and yank the drain...not sure if my surgeon would buy the "woops, I didn't mean to do that" excuse.
Thursday, June 18, 2009 2:11 PM, EDT
The drain is out! And no, I did not do it with my teeth. Though even this came with a hitch, [you really don't want details, kind of gross] but hopefully what's done is done and that chapter can be over. One step closer to normal, I can take my kids swimming and God forbid I get to sleep tonight w/o being stabbed in the side by that %#$@! tube!
I met my radiation oncologist yesterday and liked her alot. She wins the "Best Line delivered by one of Patty's doctors" award, when she came in the room perusing my chart she looks up and said: "Do you even realize how hard they've been pounding you for the past 6 months? You should look like they just peeled you off the pavement by now!" Apparently what I knew was "high dose" chemo was actually "highest dose allowable" chemo. Go figure. By the end of the conversation, she had caught onto the fact that self-care is not always a strong point for me and she not-so-gently reminded me that this wake up call needs to be given it's due respect or all this fighting will be wasted. Not that this hadn't already crossed even my stubborn mind, but it was interesting how refreshingly holistic she was, when she really could have just focused on zapping my boob in the right place for the next 6 weeks. She even called the pathologist about my nodes, and was encouraged by the high number of dead and dying cells were evident at removal. I must say, I continue to be pleased with my ever growing medical team. The main concerns for radiation are skin issues and fatigue, but nothing that should come close to the beating from chemo. For the next week, I get to get movement back in my arm, go back to Zumba, maybe even take the kids swimming. Holy crap - that almost sounds normal!
Happy rainy hump day all - I never posted the rest of the story after I talked to my oncologist yesterday. I like my surgeon, but I like talking to my oncologist way better! He was pretty neutral about the 5 nodes [we knew it was there, and now they are gone], but very positive about the tumor, very positive about the fact that my CT scan came out clear [I was more worried about that than he was], and positive about the fact that a blood test revealed I am able to metabolize Tamoxfen effectively. [New research exposed that some people cannot metabolize this estrogen-stopping medication, which is a bad situation for them, as this is a key element needed to get to a long term cure.] I meet with the radiation oncologist tomorrow [who was awarded the physician of the year from the Amercian Cancer Society in Ky this past weekend, not a bad referral!] and we'll map out the radiation plan, probably to start in a few more weeks. I feel like I should have been whooping and hurraying, but all these steps lead to more of a "take a deep breath, and keep going" reaction from me if I am being really honest about it. I think as things slow down, and I try to figure out what normal life is again, there is this acceptance and reality that it will be a really long time before cancer is very far off my radar - don't get me wrong, I was relieved yesterday, just not as excited as I thought I would be, but not negative either. Hard to explain.
I will say, for those who know me well at all, a significant milestone was met the weekend before surgery - Chris and I took the kids to waterfront park and then ate out - I had a margarita and it tasted GOOOOOOOOOD! Though some things may change as normal gets re-established, some things my friends, like my affinity for a good margarita, will not! Maybe when we walk for Susan G Komen day in October, we'll celebrate with some yummy frozen green drink!
Monday, June 15, 2009 4:06 PM, EDT
I can seriously understand why Tikaani [my dog] pulled his drain out with his teeth. I am not far from that move myself. For the non-medical types, the drain I refer to is the tube sticking out of my side attached to a bulb at the end - sort of gross, not tremendously comfortable. Each day getting more and more irritating. My next chance for getting it out is Thursday, but right now I still have too much fluid. Fabulous. I would feel human if it wasn't for the @&#^#% drain!
Went back to work today - it went well - back to busy. My radiation oncology appt got bumped to this week, so I'll know what that routine will be like. We'll see if I can get another medical provider to say something like "wow, this is really unusual" or "this shouldn't be happening this way, I haven't seen this before" - since every other doc I have seen since being diagnosed has made such a comment. I must be special. As always, I'll let you know how it goes! Until then, cross your fingers I don't lose my mind and yank the drain...not sure if my surgeon would buy the "woops, I didn't mean to do that" excuse.
Thursday, June 18, 2009 2:11 PM, EDT
The drain is out! And no, I did not do it with my teeth. Though even this came with a hitch, [you really don't want details, kind of gross] but hopefully what's done is done and that chapter can be over. One step closer to normal, I can take my kids swimming and God forbid I get to sleep tonight w/o being stabbed in the side by that %#$@! tube!
I met my radiation oncologist yesterday and liked her alot. She wins the "Best Line delivered by one of Patty's doctors" award, when she came in the room perusing my chart she looks up and said: "Do you even realize how hard they've been pounding you for the past 6 months? You should look like they just peeled you off the pavement by now!" Apparently what I knew was "high dose" chemo was actually "highest dose allowable" chemo. Go figure. By the end of the conversation, she had caught onto the fact that self-care is not always a strong point for me and she not-so-gently reminded me that this wake up call needs to be given it's due respect or all this fighting will be wasted. Not that this hadn't already crossed even my stubborn mind, but it was interesting how refreshingly holistic she was, when she really could have just focused on zapping my boob in the right place for the next 6 weeks. She even called the pathologist about my nodes, and was encouraged by the high number of dead and dying cells were evident at removal. I must say, I continue to be pleased with my ever growing medical team. The main concerns for radiation are skin issues and fatigue, but nothing that should come close to the beating from chemo. For the next week, I get to get movement back in my arm, go back to Zumba, maybe even take the kids swimming. Holy crap - that almost sounds normal!
May 28 - June 8 2009
Thursday, May 28, 2009 5:55 PM, EDT
Well let's hear it for another day of medical torture folks. What should have been a simple CT scan turns out to be a 3 hour vein popping f-bomb dropping fiasco. Apparently my veins are tiny, and a bit worn from chemo so when the MD ordered a specialized CT to follow up on the fatty liver deal that they saw 7 months ago, things did not go well. My port wouldn't cooperate, and they blew my vein on the first try so now I have a softball sized lump from the fluid that blew through and a fabulous 3 inch bruise. It took two tries on another vein, which hurt even worse even though the vein held. [This would be where the f-bombs dropped, my mother would not be proud...]So after 6 months of chemo and having had every other scan under the sun, going bald, having my estrogen halted, going to work with a plague on my face, it is a simple CT scan that reduces me to tears on the table. Go figure. Not so superhuman afterall. At least in the hospital you get good drugs for being sliced and diced like that for God's sake! I just hope they got the pictures b/c I can't have an MRI thanks to the metal in my legs and I sure as hell don't want to do this again any time soon!!
Surgery is Tuesday, I'll be home Wednesday and let you know how things go. Take care all!
Wednesday, June 3, 2009 11:44 AM, EDT
Hello all - I got home a couple of hours ago - amazing how much better you feel when you are in your own house! Surgery weny well overall,even though my veins are crap and there were some more battles to find a vein, use the vein, more blown veins - needless to say I was thrilled when they took the IV out today. So the plan for today is....to do as little as possible! Boy that sounds nice after the craptacular night's sleep you get when you are in the hospital, sharing the room with an eighty something year old woman with pnuemonia. A few immediate thanks - Lynn, the jammas are perfect, very comfy! Aunt Kathy, the plant you sent was HUGE and very pretty, St. Joe's crew - thanks for the roses, my favorite; the two "Leslie's" - your visits were a great pick me up; Leener and Erin, thanks for the comic relief and distraction last night - sorry you had to witness another vein popping outburst; and mom, thanks for the goofy kid stories, makes it nice for me to know they are having a blast.
I'll find out the pathology results Monday, but my surgeon reminded me that the results really don't change anything, as the plan goes on for Tamoxifen and radiation. I'll have the fabulous drain in for another week, I'll try to not pull it out like my dog did. :) Thanks for all the good thoughts and mojo, another milestone passed. Have a good week!
Monday, June 8, 2009 10:17 AM, EDT
Hi all - got pathology today from my surgeon, and I want to preface the results with what they mean vs. what they are. Long story short is that the results really just confirmed what we already knew; they confirmed that I've been doing the right course of treatment [and that it was OK to just take the lump and no the whole boob], that the chemo is working, and that I have to keep going with radiation and tamoxifen to finish the job. What I knew before I got the results is that less than 25% of women in my position get a totally clear report at this stage of the game, most often, as it is with me, the work just isn't done yet. Of course I wanted to hear "total pathological response, no evidence of disease" but what I got was "there was evidence of cancer taken out by surgery, evidence chemo worked, and that surgery was necessary and positive, but you are not done yet [meaning radiation, and tamoxifen]". OK - I'll take it.
The details are that there was still residual tumor when the surgeon went in, and he took it out - "with clean margins" meaning there is no tumor left now. He took out 18 nodes, 5 had evidence of cancer, and evidence that chemo was effective. The nodes work in a clear orderly chain [disease moves from one to the next], so this means the first 5 had cancer, the remaining 13 did not. They are also now gone. Once one node has cancer, you worry about any cells that "got out" and are still roaming around your body, but that's what the chemo was for, and we know this chemo did a good job killing this cancer.
I just don't want this turning into "OMG - after all that poison the cancer was still there?!" b/c the truth is chemo alone seldom kills this beast, like any thing big in life it takes a team - chemo, surgery, radiation, and in my case Tamoxifen - to get the job done right. For me the two hardest parts are done. I just have to wait a little longer to hear what I really want to hear "no evidence of disease / NED" - patience has never been a strong suit of mine!
I am still off work this week, recovering fine from surgery, though the drain is a pain to deal with. Time to lay low, and let my body keep killing cancer and healing itself. I'll check in again soon!
Well let's hear it for another day of medical torture folks. What should have been a simple CT scan turns out to be a 3 hour vein popping f-bomb dropping fiasco. Apparently my veins are tiny, and a bit worn from chemo so when the MD ordered a specialized CT to follow up on the fatty liver deal that they saw 7 months ago, things did not go well. My port wouldn't cooperate, and they blew my vein on the first try so now I have a softball sized lump from the fluid that blew through and a fabulous 3 inch bruise. It took two tries on another vein, which hurt even worse even though the vein held. [This would be where the f-bombs dropped, my mother would not be proud...]So after 6 months of chemo and having had every other scan under the sun, going bald, having my estrogen halted, going to work with a plague on my face, it is a simple CT scan that reduces me to tears on the table. Go figure. Not so superhuman afterall. At least in the hospital you get good drugs for being sliced and diced like that for God's sake! I just hope they got the pictures b/c I can't have an MRI thanks to the metal in my legs and I sure as hell don't want to do this again any time soon!!
Surgery is Tuesday, I'll be home Wednesday and let you know how things go. Take care all!
Wednesday, June 3, 2009 11:44 AM, EDT
Hello all - I got home a couple of hours ago - amazing how much better you feel when you are in your own house! Surgery weny well overall,even though my veins are crap and there were some more battles to find a vein, use the vein, more blown veins - needless to say I was thrilled when they took the IV out today. So the plan for today is....to do as little as possible! Boy that sounds nice after the craptacular night's sleep you get when you are in the hospital, sharing the room with an eighty something year old woman with pnuemonia. A few immediate thanks - Lynn, the jammas are perfect, very comfy! Aunt Kathy, the plant you sent was HUGE and very pretty, St. Joe's crew - thanks for the roses, my favorite; the two "Leslie's" - your visits were a great pick me up; Leener and Erin, thanks for the comic relief and distraction last night - sorry you had to witness another vein popping outburst; and mom, thanks for the goofy kid stories, makes it nice for me to know they are having a blast.
I'll find out the pathology results Monday, but my surgeon reminded me that the results really don't change anything, as the plan goes on for Tamoxifen and radiation. I'll have the fabulous drain in for another week, I'll try to not pull it out like my dog did. :) Thanks for all the good thoughts and mojo, another milestone passed. Have a good week!
Monday, June 8, 2009 10:17 AM, EDT
Hi all - got pathology today from my surgeon, and I want to preface the results with what they mean vs. what they are. Long story short is that the results really just confirmed what we already knew; they confirmed that I've been doing the right course of treatment [and that it was OK to just take the lump and no the whole boob], that the chemo is working, and that I have to keep going with radiation and tamoxifen to finish the job. What I knew before I got the results is that less than 25% of women in my position get a totally clear report at this stage of the game, most often, as it is with me, the work just isn't done yet. Of course I wanted to hear "total pathological response, no evidence of disease" but what I got was "there was evidence of cancer taken out by surgery, evidence chemo worked, and that surgery was necessary and positive, but you are not done yet [meaning radiation, and tamoxifen]". OK - I'll take it.
The details are that there was still residual tumor when the surgeon went in, and he took it out - "with clean margins" meaning there is no tumor left now. He took out 18 nodes, 5 had evidence of cancer, and evidence that chemo was effective. The nodes work in a clear orderly chain [disease moves from one to the next], so this means the first 5 had cancer, the remaining 13 did not. They are also now gone. Once one node has cancer, you worry about any cells that "got out" and are still roaming around your body, but that's what the chemo was for, and we know this chemo did a good job killing this cancer.
I just don't want this turning into "OMG - after all that poison the cancer was still there?!" b/c the truth is chemo alone seldom kills this beast, like any thing big in life it takes a team - chemo, surgery, radiation, and in my case Tamoxifen - to get the job done right. For me the two hardest parts are done. I just have to wait a little longer to hear what I really want to hear "no evidence of disease / NED" - patience has never been a strong suit of mine!
I am still off work this week, recovering fine from surgery, though the drain is a pain to deal with. Time to lay low, and let my body keep killing cancer and healing itself. I'll check in again soon!
May 17 - 21 2009
Sunday, May 17, 2009 7:30 AM, EDT
Holy Hotflashes and Hives friends and neighbors - round 8 seems to want to go out with a bang. My head and chest look like I got peppered with tiny red paintballs and itches like hell. I guess no good poison wants to leave my life unnoticed. And of course, this is another anomoly, doesn't "normally" happen and nothing is working ot stop it. Fabulous. Now I'm an itchy bitch. Guess I shouldn't cuss on Sunday morning. Last round...no more chemo...last round...
Another ironic twist to this weekend that I thought you all would appreciate - my dog has a tumor. [He's fine, a fatty tumor or possibly a whopping hernia that he will have surgery for Thursday.] So I'm brushing Tikaani [our Black husky] out on Saturday morning, and I get to his belly and there is this bigger than a grapefruit sized mass near his dingaling. So off to the vet we go, and after groping poor Tikaani's groin for a bit, the vet looks at me in my baldness and pink ribbon ballcap and says "This is most likely a tumor". I laughed out loud and had to say "I'm sorry, but the tumor thing is getting really old in my house!" Good news is, the vet was totally not alarmed at the fatty-whatever-it-is, happens in middle aged big dogs, and he is scheduled for surgery this week. He also didn't charge me for Saturday's visit - I think the tumor comment may have tripped him up a bit! Have a good week, cross your fingers that the mystery hives go away as quickly as they came...
Tuesday, May 19, 2009 3:31 PM, EDT
Hi All - a busy MD appt today, it feels like things are kicking into high gear again, just like at the beginning of this mess. Strange. Well, the rash/hives/plague thing I have going on remains a bit of a mystery, and they put me back on steroids yesterday to see of that would tame it - no miraculous recovery yet. Whatever. The oncologist remains very positive about my response to chemo, and very assured that "breast conserving" [i.e. not lopping the girls off] surgery is the way to go given my tumor type, tumor response, genetic results etc. So next week I have pre-surgery lab work, the final consult with the surgeon, another CT scan...then surgery on the 2nd, pathology results on the 8th, meeting with radiology to set up my radiation schedule [roughly 5 days per week for 6 weeks - in and out appts once they are set] around the 15th. Oh, and I start tamoxifen [the estrogen blocker] tomorrow - side effects can range from not much to full out menopause symptoms. Good times. The good news in all the madness is the language around me is very much about cure, not survival rates; and by mid-June I will be allowed to do normal things like swim and drink a margarita and get a pedicure [go ahead and laugh, little things mean alot!] and God forbid not have to schedule my life around side effects and poison. Just need to get through the madness of the next few weeks. Come on Dori - keep on swimming, keep on swimming....
Have a good week, next update will probably be about the dog!
Thursday, May 21, 2009 12:09 PM, EDT
Tikaani update - my spoiled rotten oversized husky is doing fine, they got rid of the fatty tumor and another icky random cyst thing that was getting infected b/c of the fatty tumor [sorry, TMI] and he is hanging out at the vet's office for the day being loved on by the vet techs...he gets a special bed, not a cage b/c he has established himself as one who will not be confined on trips past to the MD. He'll be getting his drains and stiches out just before I get mine in - love the timing here?! The vet bill is suspiciously small for a surgery and staying all day - I'll take the pink ribbon pity discount if that's what it is!
The rash/hives/plague is slowly fading, so now it is time to try to avoid the cooties one last time, get some work done, and figure out how to keep Tikaani from pulling his drains out for a week. I guess someone thought I could use the practice before dealing with my own! Yikes. Enjoy the holiday weekend!
Holy Hotflashes and Hives friends and neighbors - round 8 seems to want to go out with a bang. My head and chest look like I got peppered with tiny red paintballs and itches like hell. I guess no good poison wants to leave my life unnoticed. And of course, this is another anomoly, doesn't "normally" happen and nothing is working ot stop it. Fabulous. Now I'm an itchy bitch. Guess I shouldn't cuss on Sunday morning. Last round...no more chemo...last round...
Another ironic twist to this weekend that I thought you all would appreciate - my dog has a tumor. [He's fine, a fatty tumor or possibly a whopping hernia that he will have surgery for Thursday.] So I'm brushing Tikaani [our Black husky] out on Saturday morning, and I get to his belly and there is this bigger than a grapefruit sized mass near his dingaling. So off to the vet we go, and after groping poor Tikaani's groin for a bit, the vet looks at me in my baldness and pink ribbon ballcap and says "This is most likely a tumor". I laughed out loud and had to say "I'm sorry, but the tumor thing is getting really old in my house!" Good news is, the vet was totally not alarmed at the fatty-whatever-it-is, happens in middle aged big dogs, and he is scheduled for surgery this week. He also didn't charge me for Saturday's visit - I think the tumor comment may have tripped him up a bit! Have a good week, cross your fingers that the mystery hives go away as quickly as they came...
Tuesday, May 19, 2009 3:31 PM, EDT
Hi All - a busy MD appt today, it feels like things are kicking into high gear again, just like at the beginning of this mess. Strange. Well, the rash/hives/plague thing I have going on remains a bit of a mystery, and they put me back on steroids yesterday to see of that would tame it - no miraculous recovery yet. Whatever. The oncologist remains very positive about my response to chemo, and very assured that "breast conserving" [i.e. not lopping the girls off] surgery is the way to go given my tumor type, tumor response, genetic results etc. So next week I have pre-surgery lab work, the final consult with the surgeon, another CT scan...then surgery on the 2nd, pathology results on the 8th, meeting with radiology to set up my radiation schedule [roughly 5 days per week for 6 weeks - in and out appts once they are set] around the 15th. Oh, and I start tamoxifen [the estrogen blocker] tomorrow - side effects can range from not much to full out menopause symptoms. Good times. The good news in all the madness is the language around me is very much about cure, not survival rates; and by mid-June I will be allowed to do normal things like swim and drink a margarita and get a pedicure [go ahead and laugh, little things mean alot!] and God forbid not have to schedule my life around side effects and poison. Just need to get through the madness of the next few weeks. Come on Dori - keep on swimming, keep on swimming....
Have a good week, next update will probably be about the dog!
Thursday, May 21, 2009 12:09 PM, EDT
Tikaani update - my spoiled rotten oversized husky is doing fine, they got rid of the fatty tumor and another icky random cyst thing that was getting infected b/c of the fatty tumor [sorry, TMI] and he is hanging out at the vet's office for the day being loved on by the vet techs...he gets a special bed, not a cage b/c he has established himself as one who will not be confined on trips past to the MD. He'll be getting his drains and stiches out just before I get mine in - love the timing here?! The vet bill is suspiciously small for a surgery and staying all day - I'll take the pink ribbon pity discount if that's what it is!
The rash/hives/plague is slowly fading, so now it is time to try to avoid the cooties one last time, get some work done, and figure out how to keep Tikaani from pulling his drains out for a week. I guess someone thought I could use the practice before dealing with my own! Yikes. Enjoy the holiday weekend!
April 8 - 14 2009
Friday, May 8, 2009 7:36 AM, EDT
I know I haven't checked in in a bit - this is the good week after all, so I've been playing a little catch up at work...wish I could say the same about my housework, but oh well. I have to watch Casey's class today for Teacher Appreciation day - how badcould 25 first graders be for an hour and a half? I know, better off not asking. No GA updates, I haven't watched this week's episode yet. American Idol, however, was a disgrace [except for the Daughtry tune...]. Paula's number was just icky, and Allison should not have been booted. I know, I have reality show issues - my theory is, I see enough reality all day long, a little junk on TV in the evening is a nice break!
LAST CHEMO ROUND IS TUESDAY!!! God willing it is just one more battle with the blood counts and germ warfare, one more time dealing with mouth sores and everything tasting like I'm licking concrete, one more round of the body achy flu and tingly hands and feet, one more round of looking in the mirror and wondering just how far the rash will go! And God forbid my hair might finally have a shot of growing back in! Just one more round...
Have a good weekend, be nice to your moms, I'll check soon!
Monday, May 11, 2009 7:45 AM, EDT
Warning - the combination ofmy last round and watching Grey's Anatomy very late at night may be a bit toxic....here goes:
My sister told me I would either love last weeks GA, or hate it. Not sure if it was love or hate, but I know it made me gasp -- out loud -- twice I gasped. Then of course there were the tears streaming as Izzy gets her dream wedding, and her prince charming says and does all the right things under pressure. The first gasp was [predictably] whe Alex pulls the flower out of her hair, along with some hair. The second was when she took the scarf off. They really did it. They shaved the bombshell [or did a remarkable makeup job, but for the late nite viewers sake, it was shaved]. And once again, the damned bald head is once again a sign of a woman being torn apart for the sake of the chance at a cure - why is that? And no matter how hard you fight it, and bare it, and feel fine about it, somehow it still remains this visual of what chemo does to you. Other survivors know this, and immediately give you that wink or smile that says, "I know...hang in there...you can make it". I have already found myself in the position to give that smile to others, and I am not even through the gauntlet yet. I admit it - I want my hair back. And my health back. And my life back. And Izzy made me gasp. I actually felt a little guilty for ranting before on how they need to make this look more real. Good thing the season finale is coming up, or this GA cancer thing could get out of hand!
LAST ROUND TOMORROW!!! I don't think I've given enough credit for what this milestone would mean. I'm not sure if the emotionality comes from fatigue, joy, or just plain relief that I made it. I will wear the tacky tiara with pride. May even take a picture [and those who know me well know I don't often do pictures willingly!] Happy Monday all - have a good week!
Thursday, May 14, 2009 7:51 AM, EDT
WoooooHooooo!!! No more chemo!! Hopefully the wooohoo will get me throughthe next 2-3 weeks of side effects w/o being too grumpy, as the steroids wear off today, we'll just have to see! At least I'll be able to chant - "Last time, last time" when I get aggravated. Regardless, it was a milestone, with more to come. Part of the no more chemo rally cry came a "Oh crap, I have surgery in three weeks and alot to do before then!" Thanks to my family who came to celebrate, the Murphy's at the center, and the Keith ladies at lunch afterwards.
I meet with my oncologist next week for the remaining pre-surgery questions, and the plan for Tamoxifen and radiation, follow up scans etc. Surgery is 6/2/09, I'll stay one night and go home the morning of 6/3/09 [surgery is at Baptist East]. That's all for now - take care all!
I know I haven't checked in in a bit - this is the good week after all, so I've been playing a little catch up at work...wish I could say the same about my housework, but oh well. I have to watch Casey's class today for Teacher Appreciation day - how badcould 25 first graders be for an hour and a half? I know, better off not asking. No GA updates, I haven't watched this week's episode yet. American Idol, however, was a disgrace [except for the Daughtry tune...]. Paula's number was just icky, and Allison should not have been booted. I know, I have reality show issues - my theory is, I see enough reality all day long, a little junk on TV in the evening is a nice break!
LAST CHEMO ROUND IS TUESDAY!!! God willing it is just one more battle with the blood counts and germ warfare, one more time dealing with mouth sores and everything tasting like I'm licking concrete, one more round of the body achy flu and tingly hands and feet, one more round of looking in the mirror and wondering just how far the rash will go! And God forbid my hair might finally have a shot of growing back in! Just one more round...
Have a good weekend, be nice to your moms, I'll check soon!
Monday, May 11, 2009 7:45 AM, EDT
Warning - the combination ofmy last round and watching Grey's Anatomy very late at night may be a bit toxic....here goes:
My sister told me I would either love last weeks GA, or hate it. Not sure if it was love or hate, but I know it made me gasp -- out loud -- twice I gasped. Then of course there were the tears streaming as Izzy gets her dream wedding, and her prince charming says and does all the right things under pressure. The first gasp was [predictably] whe Alex pulls the flower out of her hair, along with some hair. The second was when she took the scarf off. They really did it. They shaved the bombshell [or did a remarkable makeup job, but for the late nite viewers sake, it was shaved]. And once again, the damned bald head is once again a sign of a woman being torn apart for the sake of the chance at a cure - why is that? And no matter how hard you fight it, and bare it, and feel fine about it, somehow it still remains this visual of what chemo does to you. Other survivors know this, and immediately give you that wink or smile that says, "I know...hang in there...you can make it". I have already found myself in the position to give that smile to others, and I am not even through the gauntlet yet. I admit it - I want my hair back. And my health back. And my life back. And Izzy made me gasp. I actually felt a little guilty for ranting before on how they need to make this look more real. Good thing the season finale is coming up, or this GA cancer thing could get out of hand!
LAST ROUND TOMORROW!!! I don't think I've given enough credit for what this milestone would mean. I'm not sure if the emotionality comes from fatigue, joy, or just plain relief that I made it. I will wear the tacky tiara with pride. May even take a picture [and those who know me well know I don't often do pictures willingly!] Happy Monday all - have a good week!
Thursday, May 14, 2009 7:51 AM, EDT
WoooooHooooo!!! No more chemo!! Hopefully the wooohoo will get me throughthe next 2-3 weeks of side effects w/o being too grumpy, as the steroids wear off today, we'll just have to see! At least I'll be able to chant - "Last time, last time" when I get aggravated. Regardless, it was a milestone, with more to come. Part of the no more chemo rally cry came a "Oh crap, I have surgery in three weeks and alot to do before then!" Thanks to my family who came to celebrate, the Murphy's at the center, and the Keith ladies at lunch afterwards.
I meet with my oncologist next week for the remaining pre-surgery questions, and the plan for Tamoxifen and radiation, follow up scans etc. Surgery is 6/2/09, I'll stay one night and go home the morning of 6/3/09 [surgery is at Baptist East]. That's all for now - take care all!
Apr 21 - 30 2009
Tuesday, April 21, 2009 5:46 PM, EDT
ONE MORE ROUND OF CHEMO!!! That statement has been a long time coming...a signal that the end of the road is finally coming into view. My surgery may get bumped a week - nothing tragic, just need an extra week to get my blood back - the last thing I need is infection from going into surgery with cruddy blood counts. Regardless, about 5 weeks from now I will no longer have to plan everything around blood counts and weak/sore days, and mouth sores and steroid buzzes. OK, now granted I will have to work around surgery recovery, radiation, and estrogen blockers, but from what I hear from others and from the MD's, this is far more workable than 6 solid months of high dose chemo.
I was waching Evan Almighty at mom's house the other day [didn't see the end - I assume Noah got to float the arc?!] and there was one scene where "God" tells Evan that when we pray for hope, God doesn't give us hope, he gives us opportunity to be hopeful. If we pray for Love he doesn't give us warm fuzzies, rather he gives us the opportunity to love and be loved. If we pray for life to change, he gives us the opportunity to change it. Pretty insightful writing for a cheesy movie I thought. My prayers vary day by day, but I do believe that at some point through this mess I will figure out where my opportunity to make my change and how to make it will take form. Until then Chris, the kids and I keep on swimming, I count my blessings, and I thank the baby Jesus that I am nearly done having poison surging through my veins!! Take care all, I'll check in again soon!
Monday, April 27, 2009 8:59 AM, EDT
Warning - Grey's Anatomy commentary - or skip to below if you only want my updates! :) OK - the Izzy story is what it is, she'll either die valiently with her friends by her side, or she'll have a miraculous recovery from stage IV skin cancer and continue her career as the bad-boundaried empathetic MD...depending on what her contract with the show dictates. Regardless - there are 2 points that I noticed from Thursday's show. #1 - That oncologist is wretched, and no one in oncology acts like that, even if they know their patient is clueless as to how bad things are about to get. Oncology is the place where they look you dead in the face to deliver bad news - no squirming and certainly no dramatics on their part. #2 - The brief view they gave of the treatment room was pretty real. And the characters remain the same; there are the optimisits [real and/or clueless], the really sick ones, and the in-betweens. I wish they would have shown how great oncology nurses are...but, I didn't write the show now did I?
As for me, surgery is offically bumped to 6/2/09 to make sure my blood counts have time to bounce back. My last chemo is 5/12/09 - apparently I get to wear a tiara to mark the occasion - fabulous...Radiation probably won't start until July. We'll figure out the parade of helpers as we get closer...Casey is getting quite used to some sort of spoiling every time I have some down time - would hate to break that trend now! Enjoy the Derby fun - for those going to the Oaks, don't forget it is a "pink out" for Susan G Komen this year - so wear your pretty pink and drink a Julep for me!
Thursday, April 30, 2009 12:36 PM, EDT
Well it is a good thing I didn't have any plans to hang out in the infield this year, because apparently I am redefining my definition of bad blood counts every round...I have hit an all time low [talking about counts, not morale!] once again, so I will be changing antibiotics and washing my hands like a madwoman and trying to avoid the swine flu and whatever else the germ ridden world has to offer. The good news from today is we think the raging not so fabulous rash on my chest and face is from the antibiotics, not the chemo, so we changed drugs and hopefully the red rage will stop crawling up my face. One more round...one more round...As the nurse practitioner [who I like] reviewed the bloodwork and settled into her come to Jesus speach about how critical it was that I stay away from new cooties right now, I laughed and reminded her where I worked and who I worked with and the fact that I have one kid in daycare and another in school - first grade no less, as germy as it gets. All she could muster while shaking her head was "wash your hands like you've never washed before".Yikes. One more round...one more round...
ONE MORE ROUND OF CHEMO!!! That statement has been a long time coming...a signal that the end of the road is finally coming into view. My surgery may get bumped a week - nothing tragic, just need an extra week to get my blood back - the last thing I need is infection from going into surgery with cruddy blood counts. Regardless, about 5 weeks from now I will no longer have to plan everything around blood counts and weak/sore days, and mouth sores and steroid buzzes. OK, now granted I will have to work around surgery recovery, radiation, and estrogen blockers, but from what I hear from others and from the MD's, this is far more workable than 6 solid months of high dose chemo.
I was waching Evan Almighty at mom's house the other day [didn't see the end - I assume Noah got to float the arc?!] and there was one scene where "God" tells Evan that when we pray for hope, God doesn't give us hope, he gives us opportunity to be hopeful. If we pray for Love he doesn't give us warm fuzzies, rather he gives us the opportunity to love and be loved. If we pray for life to change, he gives us the opportunity to change it. Pretty insightful writing for a cheesy movie I thought. My prayers vary day by day, but I do believe that at some point through this mess I will figure out where my opportunity to make my change and how to make it will take form. Until then Chris, the kids and I keep on swimming, I count my blessings, and I thank the baby Jesus that I am nearly done having poison surging through my veins!! Take care all, I'll check in again soon!
Monday, April 27, 2009 8:59 AM, EDT
Warning - Grey's Anatomy commentary - or skip to below if you only want my updates! :) OK - the Izzy story is what it is, she'll either die valiently with her friends by her side, or she'll have a miraculous recovery from stage IV skin cancer and continue her career as the bad-boundaried empathetic MD...depending on what her contract with the show dictates. Regardless - there are 2 points that I noticed from Thursday's show. #1 - That oncologist is wretched, and no one in oncology acts like that, even if they know their patient is clueless as to how bad things are about to get. Oncology is the place where they look you dead in the face to deliver bad news - no squirming and certainly no dramatics on their part. #2 - The brief view they gave of the treatment room was pretty real. And the characters remain the same; there are the optimisits [real and/or clueless], the really sick ones, and the in-betweens. I wish they would have shown how great oncology nurses are...but, I didn't write the show now did I?
As for me, surgery is offically bumped to 6/2/09 to make sure my blood counts have time to bounce back. My last chemo is 5/12/09 - apparently I get to wear a tiara to mark the occasion - fabulous...Radiation probably won't start until July. We'll figure out the parade of helpers as we get closer...Casey is getting quite used to some sort of spoiling every time I have some down time - would hate to break that trend now! Enjoy the Derby fun - for those going to the Oaks, don't forget it is a "pink out" for Susan G Komen this year - so wear your pretty pink and drink a Julep for me!
Thursday, April 30, 2009 12:36 PM, EDT
Well it is a good thing I didn't have any plans to hang out in the infield this year, because apparently I am redefining my definition of bad blood counts every round...I have hit an all time low [talking about counts, not morale!] once again, so I will be changing antibiotics and washing my hands like a madwoman and trying to avoid the swine flu and whatever else the germ ridden world has to offer. The good news from today is we think the raging not so fabulous rash on my chest and face is from the antibiotics, not the chemo, so we changed drugs and hopefully the red rage will stop crawling up my face. One more round...one more round...As the nurse practitioner [who I like] reviewed the bloodwork and settled into her come to Jesus speach about how critical it was that I stay away from new cooties right now, I laughed and reminded her where I worked and who I worked with and the fact that I have one kid in daycare and another in school - first grade no less, as germy as it gets. All she could muster while shaking her head was "wash your hands like you've never washed before".Yikes. One more round...one more round...
Apr 3 - 13 209
Friday, April 3, 2009 6:41 PM, EDT
Hi all - I forget about the fact that silence on my part can be a bit decieving, and since I have been honest about the profound crappiness of chemo, some of you may envision me curled up on my couch in sheer misery, when that's not always necessarily the case. This is round 2 of the new drug, so therefore it is more predictable, which takes much of the edge off of it. This is more like knowing you'll have the flu for a couple of days, except you know when it will come so you can kiss your kids and send them off to grandma's house and be lazy until it passes! Sometimes even I can wallow in a little self care, and not be so determined to suck it up and be "normal". The other fact is on other days it helps to be "normal" even if I feel like crap - doesn't mean I'm trying to be a martyr, just my way of keeping on. One of my favorite kid's movie scenes is at the end of Finding Nemo when Dori is in the net with the silver fish, and they are all freaking out b/c the next is dragging them out of the ocean, and Dori, just keeps swimming against the pull singing "keep on swimming, keep on swimming...." Call me Dori - and each day whether good or bad, achy or pukey, mouth sores or not, I feel it is right for me to "keep on swimming". And it is no secret to me that all you well wishers and posters or lurkers are swimming along too.
Thanks to the Owenton crew for spoiling Casey over Spring Break - it's fun seeling your 7 year old totally wiped out from just plain goofing off and running around in the country. Keeping my kids in the "normal" is the biggest help of all. Have a good weekend...keep on swimming...keep on swimming... :)
Friday, April 10, 2009 8:01 AM, EDT
My pity parties come at very inopportune times. Last night at church I was so pissed that my mouth wouldn't work right [swollen on the inside from chemo] and I thought I sounded like crap [I play the flute with choir] that I nearly let it ruin the fact that I was able to be there at all. Mind you, few people there would have noticed much of a difference, nor would anyone care...again - my own personal pity party. It seems the closer I get to the end of chemo the longer it seems to take, and I get so damned tired of not being able to do what I want when I want and feel how I want to doing it. [Can you get the visual of me stomping my feet and wailing like Logie?!] OK Patty, time to regroup...
So today I am doing a morning meeting at a hospital and calling it quits for the day before I ruin my whole weekend by pouting. My best guess is that my counts are in the dump, which sucks the energy right out of me, and combined with a little sleep deprivation is just a bad mix. Time for Dori to sleep it off, enjoy the Easter hubbub for the weekend, and try not to get caught sneaking chocolate from the kids' Easter baskets. Keep on swimming...keep on swimming...
Tuesday, April 14, 2009 7:51 AM, EDT
Hi all, hope you had a good Easter / Passover weekend. My pity party ended, and the weekend went well, I'll try to remember to upload pics tonight, the boys had fun decorating eggs, and spend a laid back Sunday playing outside and blowing bubbles with Daddy. By Monday I was even able to eat food that had more texture than pudding!
On the medical side - I have a surgery date - 5/26/09, just an overnight inthe hospital. For the googlers, it is a "lumpectomy with axillary node dissection" - the rewards of enduring chemo first. Statistically speaking since I have responded so well to chemo and my gene test is negative I can feel safe having this proceedure and still get to a cure. I should only be out of work a couple of weeks. [We'll figure out what help will come into play when it gets closer]. My blood counts remain in the dumper [really anemic] but with two rounds left we try to not do anything else but suck it up and hope my blood can maintain just a little longer before it gets a well deserved break! Kind of like the rest of me - suck it up and hang in - the finish line is in sight!!
Have a good week - next round #7 - is next week. ALMOST DONE WITH CHEMO!!!
Hi all - I forget about the fact that silence on my part can be a bit decieving, and since I have been honest about the profound crappiness of chemo, some of you may envision me curled up on my couch in sheer misery, when that's not always necessarily the case. This is round 2 of the new drug, so therefore it is more predictable, which takes much of the edge off of it. This is more like knowing you'll have the flu for a couple of days, except you know when it will come so you can kiss your kids and send them off to grandma's house and be lazy until it passes! Sometimes even I can wallow in a little self care, and not be so determined to suck it up and be "normal". The other fact is on other days it helps to be "normal" even if I feel like crap - doesn't mean I'm trying to be a martyr, just my way of keeping on. One of my favorite kid's movie scenes is at the end of Finding Nemo when Dori is in the net with the silver fish, and they are all freaking out b/c the next is dragging them out of the ocean, and Dori, just keeps swimming against the pull singing "keep on swimming, keep on swimming...." Call me Dori - and each day whether good or bad, achy or pukey, mouth sores or not, I feel it is right for me to "keep on swimming". And it is no secret to me that all you well wishers and posters or lurkers are swimming along too.
Thanks to the Owenton crew for spoiling Casey over Spring Break - it's fun seeling your 7 year old totally wiped out from just plain goofing off and running around in the country. Keeping my kids in the "normal" is the biggest help of all. Have a good weekend...keep on swimming...keep on swimming... :)
Friday, April 10, 2009 8:01 AM, EDT
My pity parties come at very inopportune times. Last night at church I was so pissed that my mouth wouldn't work right [swollen on the inside from chemo] and I thought I sounded like crap [I play the flute with choir] that I nearly let it ruin the fact that I was able to be there at all. Mind you, few people there would have noticed much of a difference, nor would anyone care...again - my own personal pity party. It seems the closer I get to the end of chemo the longer it seems to take, and I get so damned tired of not being able to do what I want when I want and feel how I want to doing it. [Can you get the visual of me stomping my feet and wailing like Logie?!] OK Patty, time to regroup...
So today I am doing a morning meeting at a hospital and calling it quits for the day before I ruin my whole weekend by pouting. My best guess is that my counts are in the dump, which sucks the energy right out of me, and combined with a little sleep deprivation is just a bad mix. Time for Dori to sleep it off, enjoy the Easter hubbub for the weekend, and try not to get caught sneaking chocolate from the kids' Easter baskets. Keep on swimming...keep on swimming...
Tuesday, April 14, 2009 7:51 AM, EDT
Hi all, hope you had a good Easter / Passover weekend. My pity party ended, and the weekend went well, I'll try to remember to upload pics tonight, the boys had fun decorating eggs, and spend a laid back Sunday playing outside and blowing bubbles with Daddy. By Monday I was even able to eat food that had more texture than pudding!
On the medical side - I have a surgery date - 5/26/09, just an overnight inthe hospital. For the googlers, it is a "lumpectomy with axillary node dissection" - the rewards of enduring chemo first. Statistically speaking since I have responded so well to chemo and my gene test is negative I can feel safe having this proceedure and still get to a cure. I should only be out of work a couple of weeks. [We'll figure out what help will come into play when it gets closer]. My blood counts remain in the dumper [really anemic] but with two rounds left we try to not do anything else but suck it up and hope my blood can maintain just a little longer before it gets a well deserved break! Kind of like the rest of me - suck it up and hang in - the finish line is in sight!!
Have a good week - next round #7 - is next week. ALMOST DONE WITH CHEMO!!!
Mar 29 - Apr 1 2009
Sunday, March 29, 2009 9:17 PM, EDT
WAAAAAAAAAHHHHHHH!!!!! Whew, got that over with. I really thought the Cards would make it further this year, oh well, at least the kids have their rightful spot back in the photo box.
Treatment wise, my mouth healed up, my legs aren't swollen, and I've managed to eat like a human, which must only mean that that round #6 is around the corner, Tuesday actually - and I find out the results of my BRCA/gene test in the next week or so - the next big hurdle.
One of my favorite TV shows has officially become a train wreck that I can't help but watch. I mean really, how many of you predicted the hallucinating Izzy storyline ending up with her having stage 4 cancer? [Yes, Grey's Anatomy for those who watch more mature TV.] I hate to admit, two weeks ago when the friends all rallied and she accepted her diagnosis I actually cried [though I hope that had more to do with the Taxotere screwing with my hormones, and the Lortabs I was on for my mouth...] Last week I was far more cynical though. I kept thinking are the writers really going to show how ugly cancer treatment is? Are they really going to show this blond beauty week after week bald and bloated, with serious makeup covering the fact she has no eyebrows or lashes, with port scars and swollen ankles crawling to the bathroom to barf?? I think not. That's the hypocracy with me and TV, I watch rediculous shows and then when the plot hits close to home I expect them to be more realistic - my twisted version of a pity party in this case I suppose. I know, I've got issues. Regardless you can bet Grey's remains in my TiVo, and I'll be sure to tune in to see where this story goes. Rediculous, I know. Alot of things are a bit rediculous right now - might as well be entertained by some of it!
Tuesday, March 31, 2009 12:12 PM, EDT
Round 6 done - two to go!! So for now it is deal with side effects, which I am better prepared for, and wait for the BRCA test. Looks like I'll have to do radiation no matter which surgery I have - and oddly, knowing that is nice because it doesn't have to play into my surgery decision [I also found out the weight gain was water weight from steroids b/c it left as quickly as it came thank GOD]. If I get a negative BRCA, we save the TaTa's, if not, I eventually get new ones. From those I've talked to [patients as well as medical people] radiation is nothing compared to Chemo in my case, largely b/c of location and how fine tuned they can make it. I figure surgery should land sometime early June, but I'll find out in a few weeks when I have all the info I need to meet with my surgeon again.
So, for now I will try to be productive while I have the extra jolt from steroids for a couple of more days - kind of like telling an ADHD kid to sit down - we'll see how that works out. See? I am already managing to not do my paperwork.
Take care all - keep the mojo coming for news/results/decisions to come. And make yourself watch Grey's Anatomy so you'll know what I'm talking about when I gripe about the Izzy storyline...ok, mabye not. Let's blame that comment on the steroids! :)
Wednesday, April 1, 2009 3:19 PM, EDT
BRCA 1/2 NEGATIVE!!!! I do not carry the breast/ovarian cancer mutated gene.The best news in a long time for me - the tata's are saved, my surgery can be far less invasive, and the women in my family don't have daunting statistics weighing against them in regards to breast/ovarian cancers. Needless to say a huge relief and a huge weight lifted off of me. Maybe this road is finally getting shorter for a change!
WAAAAAAAAAHHHHHHH!!!!! Whew, got that over with. I really thought the Cards would make it further this year, oh well, at least the kids have their rightful spot back in the photo box.
Treatment wise, my mouth healed up, my legs aren't swollen, and I've managed to eat like a human, which must only mean that that round #6 is around the corner, Tuesday actually - and I find out the results of my BRCA/gene test in the next week or so - the next big hurdle.
One of my favorite TV shows has officially become a train wreck that I can't help but watch. I mean really, how many of you predicted the hallucinating Izzy storyline ending up with her having stage 4 cancer? [Yes, Grey's Anatomy for those who watch more mature TV.] I hate to admit, two weeks ago when the friends all rallied and she accepted her diagnosis I actually cried [though I hope that had more to do with the Taxotere screwing with my hormones, and the Lortabs I was on for my mouth...] Last week I was far more cynical though. I kept thinking are the writers really going to show how ugly cancer treatment is? Are they really going to show this blond beauty week after week bald and bloated, with serious makeup covering the fact she has no eyebrows or lashes, with port scars and swollen ankles crawling to the bathroom to barf?? I think not. That's the hypocracy with me and TV, I watch rediculous shows and then when the plot hits close to home I expect them to be more realistic - my twisted version of a pity party in this case I suppose. I know, I've got issues. Regardless you can bet Grey's remains in my TiVo, and I'll be sure to tune in to see where this story goes. Rediculous, I know. Alot of things are a bit rediculous right now - might as well be entertained by some of it!
Tuesday, March 31, 2009 12:12 PM, EDT
Round 6 done - two to go!! So for now it is deal with side effects, which I am better prepared for, and wait for the BRCA test. Looks like I'll have to do radiation no matter which surgery I have - and oddly, knowing that is nice because it doesn't have to play into my surgery decision [I also found out the weight gain was water weight from steroids b/c it left as quickly as it came thank GOD]. If I get a negative BRCA, we save the TaTa's, if not, I eventually get new ones. From those I've talked to [patients as well as medical people] radiation is nothing compared to Chemo in my case, largely b/c of location and how fine tuned they can make it. I figure surgery should land sometime early June, but I'll find out in a few weeks when I have all the info I need to meet with my surgeon again.
So, for now I will try to be productive while I have the extra jolt from steroids for a couple of more days - kind of like telling an ADHD kid to sit down - we'll see how that works out. See? I am already managing to not do my paperwork.
Take care all - keep the mojo coming for news/results/decisions to come. And make yourself watch Grey's Anatomy so you'll know what I'm talking about when I gripe about the Izzy storyline...ok, mabye not. Let's blame that comment on the steroids! :)
Wednesday, April 1, 2009 3:19 PM, EDT
BRCA 1/2 NEGATIVE!!!! I do not carry the breast/ovarian cancer mutated gene.The best news in a long time for me - the tata's are saved, my surgery can be far less invasive, and the women in my family don't have daunting statistics weighing against them in regards to breast/ovarian cancers. Needless to say a huge relief and a huge weight lifted off of me. Maybe this road is finally getting shorter for a change!
Mar `17 - 23 2009
Tuesday, March 17, 2009 10:49 AM, CDT
May St. Patrick guard you wherever you go,
and guide you in whatever you do--
and may his loving protection be a blessing to you always.
May the road rise to meet you,
May the wind be always at your back,
May the sun shine warm upon your face,
The rains fall soft upon your fields and,
Until we meet again,
May God hold you in the palm of His hand.
May you have love that never ends,
lots of money, and lots of friends.
Health be yours, whatever you do,
and may God send many blessings to you!
HAPPY ST.PATTY'S DAY!!!!
Sending many blessings to all of you who keep my spirits up, my sarcasm quick, and may sanity intact!
Thursday, March 19, 2009 1:57 PM, EDT
I finally get to take the BRCA test!!! After weeks of insurance runaround, and a final two weeks of "it's in the mail", the approval letter for my gene test is in the right hands, and I get my blood drawn tomorrow...in two weeks I'll know whether my surgery will be big, or little...for the wishers and prayers out there, we want a negative result - a positive brings about a lot of hassle and consequences, for me, and the other women in my family. At least I will know where this road is leading, and can get ready for that.
Chemo love has stricken again, this time in the form of mouth sores...there's always something to remind me that there are some serious toxins tooling around my body...as if my stellar bald head in the mirror every morning wasn't a clear enough reminder. Amazingly, foods that are sugary and fattening don't seem to hurt as much to eat as healthy foods, can't wait to get on the scale at my next MD appt - yikes.
You'll notice the cardinal logo has replaced Casey on the front page, it's March madness you know, and time to show your loyalty - I'm sure Casey will forgive me! Sorry High on the Hill, you'll see that little Cardinal up there till the fat lady sings and the madness is over, hope it doesn't pain you too much! :) GO CARDS!!!
Monday, March 23, 2009 4:38 PM, CDT
Hi all - hope everyone enjoyed the ball game last night - cardiac cards at it again...but hey, we won!
Medical updates: Got the blood drawn for the BRCA test, will know within 2-3 weeks what my surgical fate is. Had an MD appt today, my blood counts are in the dump again [low white cells, anemic] and there is basically not much else I can do for these fabulously raging mouth sores other than eat mush and use a foul tasting mouthwash that will at least numb things for awhile. I guess that's what I get for thinking I would come through this round unscathed. Good thing macaroni and cheese is soft. So is Cake. As a bonus I can temporarily blame any weight gain on the boating and swelling from the steroids. Oh well. Chemo sucks. We knew this. Next round is 3/31...only three rounds left!!
Thanks for checking in, pray for negative test results, have a good week and GO CARDS!!!
May St. Patrick guard you wherever you go,
and guide you in whatever you do--
and may his loving protection be a blessing to you always.
May the road rise to meet you,
May the wind be always at your back,
May the sun shine warm upon your face,
The rains fall soft upon your fields and,
Until we meet again,
May God hold you in the palm of His hand.
May you have love that never ends,
lots of money, and lots of friends.
Health be yours, whatever you do,
and may God send many blessings to you!
HAPPY ST.PATTY'S DAY!!!!
Sending many blessings to all of you who keep my spirits up, my sarcasm quick, and may sanity intact!
Thursday, March 19, 2009 1:57 PM, EDT
I finally get to take the BRCA test!!! After weeks of insurance runaround, and a final two weeks of "it's in the mail", the approval letter for my gene test is in the right hands, and I get my blood drawn tomorrow...in two weeks I'll know whether my surgery will be big, or little...for the wishers and prayers out there, we want a negative result - a positive brings about a lot of hassle and consequences, for me, and the other women in my family. At least I will know where this road is leading, and can get ready for that.
Chemo love has stricken again, this time in the form of mouth sores...there's always something to remind me that there are some serious toxins tooling around my body...as if my stellar bald head in the mirror every morning wasn't a clear enough reminder. Amazingly, foods that are sugary and fattening don't seem to hurt as much to eat as healthy foods, can't wait to get on the scale at my next MD appt - yikes.
You'll notice the cardinal logo has replaced Casey on the front page, it's March madness you know, and time to show your loyalty - I'm sure Casey will forgive me! Sorry High on the Hill, you'll see that little Cardinal up there till the fat lady sings and the madness is over, hope it doesn't pain you too much! :) GO CARDS!!!
Monday, March 23, 2009 4:38 PM, CDT
Hi all - hope everyone enjoyed the ball game last night - cardiac cards at it again...but hey, we won!
Medical updates: Got the blood drawn for the BRCA test, will know within 2-3 weeks what my surgical fate is. Had an MD appt today, my blood counts are in the dump again [low white cells, anemic] and there is basically not much else I can do for these fabulously raging mouth sores other than eat mush and use a foul tasting mouthwash that will at least numb things for awhile. I guess that's what I get for thinking I would come through this round unscathed. Good thing macaroni and cheese is soft. So is Cake. As a bonus I can temporarily blame any weight gain on the boating and swelling from the steroids. Oh well. Chemo sucks. We knew this. Next round is 3/31...only three rounds left!!
Thanks for checking in, pray for negative test results, have a good week and GO CARDS!!!
Mar 6 - Mar 14 2009
Friday, March 6, 2009 10:42 AM, EST
Fashion tip for bald chicks during spring time in Louisville - cotton scarves are far better- pretty silky ones fly right off a bald noggin on a good breezy day! So thanks again "high on the hill" - chemo girls can learn alot about headgear from biker girls...I need to get some ballcaps for warmer days, but my head is seriously huge - I tried to swipe Chris' UofL hat the other day to run an errand, and couldn't wear it! You would think without hair anything would fit...nope, not for this Irish noggin.
Not much for updates, the cold is subsiding, my voice is back [though my kids and clients may have like me better muted], now we are all safely on allergy meds looking forward to a WARM weekend. My next round is Tuesday, because in theory I should be fine for a few days until I am off the steroids, and then I'll be due to crash for a day or so with fatigue and soreness...and then back to normal life. We'll see about all that [remember round 1? I'm still a bit cynical]. Regardless, I'm hoping that will be the way it goes, I'll be sure to let you know the real story. Enjoy the SUN this weekend, I'll check in after round 5!!
Tuesday, March 10, 2009 7:01 PM, EDT
So far so good on round 5, the no nausia promise is holding up - WOOOHOOOO!!!!...but the "crash" is not expected until Friday or so. The crash would be the opposite of the current jacked up on steroids somewhat false sense of energy I have going on. Can't stay on steroids forever, so Friday they stop and my body has to finish the job working with the chemo -- therefore, a bone aching fatigue ridden crash from what I am told. Hopefully short lived, then gradually back to normal [whatever normal is anymore]. For now, I'll enjoy the steroid jolt.
The treatment room was interesting today, the woman across from me today had an allergic reaction to her chemo [a close cousin to mine]...what made it extra sad was that it was round 1 for her and she had her own chemo party there, and she already seemed terrified, and then an allergic reaction [which is handled quickly but leads to alot of hubbub and anxiety when they restart your drip]. I have to say, her chemo support system was quite entertaining and helped time pass.They were fun to talk to, and were not terrified themselves, just worried about their friend. Another older couple was next to me and when the wife/patient went to the bathroom he asked me "So what do you think if I tell her I'll shave my head too when it's time to shave hers?" It was terribly sweet, I told him to tell her his idea even though she'll probably tell him not to do it, but it will be good for her to know he understands what a big deal it is for her. She had had a reaction to the same med yesterday and was back to try another today. She was tough though, I guess age puts a different perspective on all this crap. The older folks just don't seem as shaken.
Long post today - told you I was jacked up on steroids, better sign off before I really start rattling about something strange...stanger than the chemo treatment room.
Saturday, March 14, 2009 2:15 PM, EDT
The world of chemo is a strange place...keep that in mind as I say I am thrilled to feel like I have been hit by a car [achy all over, slow and dragging today] because that is SO MUCH better than the nausia and sickness of the first four rounds. So I will consider myself lucky if this is as far as it goes [today should be the low point so there is hope there!] I am on far fewer meds, which has to help...I have never been the earthy granola type [as you all well know] but this process will certainly make you appreciate putting as few chemicals in your body as you can for awhile. Killing cancer is apparently a very unnatural process.
So for today it's karate class and watching the UofL game [GO CARDS!!]...I don't expect to be much more ambitous than that. Maybe tomorrow I'll upgrade form sloth status to turtle speed...but really who cares, at least I can move!
Fashion tip for bald chicks during spring time in Louisville - cotton scarves are far better- pretty silky ones fly right off a bald noggin on a good breezy day! So thanks again "high on the hill" - chemo girls can learn alot about headgear from biker girls...I need to get some ballcaps for warmer days, but my head is seriously huge - I tried to swipe Chris' UofL hat the other day to run an errand, and couldn't wear it! You would think without hair anything would fit...nope, not for this Irish noggin.
Not much for updates, the cold is subsiding, my voice is back [though my kids and clients may have like me better muted], now we are all safely on allergy meds looking forward to a WARM weekend. My next round is Tuesday, because in theory I should be fine for a few days until I am off the steroids, and then I'll be due to crash for a day or so with fatigue and soreness...and then back to normal life. We'll see about all that [remember round 1? I'm still a bit cynical]. Regardless, I'm hoping that will be the way it goes, I'll be sure to let you know the real story. Enjoy the SUN this weekend, I'll check in after round 5!!
Tuesday, March 10, 2009 7:01 PM, EDT
So far so good on round 5, the no nausia promise is holding up - WOOOHOOOO!!!!...but the "crash" is not expected until Friday or so. The crash would be the opposite of the current jacked up on steroids somewhat false sense of energy I have going on. Can't stay on steroids forever, so Friday they stop and my body has to finish the job working with the chemo -- therefore, a bone aching fatigue ridden crash from what I am told. Hopefully short lived, then gradually back to normal [whatever normal is anymore]. For now, I'll enjoy the steroid jolt.
The treatment room was interesting today, the woman across from me today had an allergic reaction to her chemo [a close cousin to mine]...what made it extra sad was that it was round 1 for her and she had her own chemo party there, and she already seemed terrified, and then an allergic reaction [which is handled quickly but leads to alot of hubbub and anxiety when they restart your drip]. I have to say, her chemo support system was quite entertaining and helped time pass.They were fun to talk to, and were not terrified themselves, just worried about their friend. Another older couple was next to me and when the wife/patient went to the bathroom he asked me "So what do you think if I tell her I'll shave my head too when it's time to shave hers?" It was terribly sweet, I told him to tell her his idea even though she'll probably tell him not to do it, but it will be good for her to know he understands what a big deal it is for her. She had had a reaction to the same med yesterday and was back to try another today. She was tough though, I guess age puts a different perspective on all this crap. The older folks just don't seem as shaken.
Long post today - told you I was jacked up on steroids, better sign off before I really start rattling about something strange...stanger than the chemo treatment room.
Saturday, March 14, 2009 2:15 PM, EDT
The world of chemo is a strange place...keep that in mind as I say I am thrilled to feel like I have been hit by a car [achy all over, slow and dragging today] because that is SO MUCH better than the nausia and sickness of the first four rounds. So I will consider myself lucky if this is as far as it goes [today should be the low point so there is hope there!] I am on far fewer meds, which has to help...I have never been the earthy granola type [as you all well know] but this process will certainly make you appreciate putting as few chemicals in your body as you can for awhile. Killing cancer is apparently a very unnatural process.
So for today it's karate class and watching the UofL game [GO CARDS!!]...I don't expect to be much more ambitous than that. Maybe tomorrow I'll upgrade form sloth status to turtle speed...but really who cares, at least I can move!
Feb 23 - Mar 2 2009
Monday, February 23, 2009 1:57 PM, EST
Casey prayed for me at Sunday School yesterday. I know that this should be in the sweet and endearing category - and it is mostly - but there is that part of me that is so saddened by the fact that my seven year old even has to have the concept that cancer is in his world and it merits asking God for help...seven year olds shouldn't have to know that God needs to help his mommy because she has cancer. He's such a good boy, and too smart for his own good. Another hill in this roller coaster - I'm ok on the roller coaster, I can handle it. I HATE that my kids are stuck in the car riding with me. The ultimate of not fair.
"Auntie Lynn" had asked about the significance of the BRCA [genetic] test. The brief layman's version is this: there is a specific gene mutation that causes many breast and ovarian cancers, and about 10 years ago, scientists figured out how to spot it. If I have it [2.9% chance of this], then statistics show an greatly increased chance of me getting another breast/ovarian cancer in my lifetime - therefore I would need to get a double mastectomy and have my ovaries and tubes removed as well to prevent that from happening. My female blood relatives would also have access to the same test to make decisions for themselves. If I DON'T have it [97.1% chance of this] then I can feel safe having a lumpectomy with some lymph nodes removed [basically a clean up job to be sure the cancer is all gone] and keep the ta ta's and other female organs intact. The results of this test is the only information left that is needed to make the most logical and informed decision for my surgery - that's why when St. Joe's [my employer] got it approved, it was such a big deal. So there it is, your first lesson in BRCA testing.
Happy Monday - two weeks until round 5 and adventures with a new drug. Later!
Monday, March 2, 2009 8:46 AM, EST
Well my immune system finally threw up its hands and said "enough already!"... in other words I finally got Logan's cold. So I have this fabulous Demi Moore voice going on, in addition to the lovely "my blood counts are off rash/acne" and sleep deprivation b/c now all of the sudden psuedafed jacks me up at night. In other words - I'm somewhat of a damned mess today - oh well, another reminder that I am not superhuman. So today it's thank God for psuedafed, tylenol, warm hats and the Bath and Body works Anti Bacterial collection. Happy Monday Indeed. Maybe I should make those insurance calls to day and scare the crap out of them by screaming with a hoarse voice and then hacking mid sentence - think that might push some approvals along?? Could be interesting at least.
So Happy Monday gang, wash your hands, and don't take psuedafed before bed. My words of wisdom for the day!
Casey prayed for me at Sunday School yesterday. I know that this should be in the sweet and endearing category - and it is mostly - but there is that part of me that is so saddened by the fact that my seven year old even has to have the concept that cancer is in his world and it merits asking God for help...seven year olds shouldn't have to know that God needs to help his mommy because she has cancer. He's such a good boy, and too smart for his own good. Another hill in this roller coaster - I'm ok on the roller coaster, I can handle it. I HATE that my kids are stuck in the car riding with me. The ultimate of not fair.
"Auntie Lynn" had asked about the significance of the BRCA [genetic] test. The brief layman's version is this: there is a specific gene mutation that causes many breast and ovarian cancers, and about 10 years ago, scientists figured out how to spot it. If I have it [2.9% chance of this], then statistics show an greatly increased chance of me getting another breast/ovarian cancer in my lifetime - therefore I would need to get a double mastectomy and have my ovaries and tubes removed as well to prevent that from happening. My female blood relatives would also have access to the same test to make decisions for themselves. If I DON'T have it [97.1% chance of this] then I can feel safe having a lumpectomy with some lymph nodes removed [basically a clean up job to be sure the cancer is all gone] and keep the ta ta's and other female organs intact. The results of this test is the only information left that is needed to make the most logical and informed decision for my surgery - that's why when St. Joe's [my employer] got it approved, it was such a big deal. So there it is, your first lesson in BRCA testing.
Happy Monday - two weeks until round 5 and adventures with a new drug. Later!
Monday, March 2, 2009 8:46 AM, EST
Well my immune system finally threw up its hands and said "enough already!"... in other words I finally got Logan's cold. So I have this fabulous Demi Moore voice going on, in addition to the lovely "my blood counts are off rash/acne" and sleep deprivation b/c now all of the sudden psuedafed jacks me up at night. In other words - I'm somewhat of a damned mess today - oh well, another reminder that I am not superhuman. So today it's thank God for psuedafed, tylenol, warm hats and the Bath and Body works Anti Bacterial collection. Happy Monday Indeed. Maybe I should make those insurance calls to day and scare the crap out of them by screaming with a hoarse voice and then hacking mid sentence - think that might push some approvals along?? Could be interesting at least.
So Happy Monday gang, wash your hands, and don't take psuedafed before bed. My words of wisdom for the day!
Feb 14 - Feb 20 2009
Saturday, February 14, 2009 4:15 PM, EST
No more FEC!!!! [The name of the quality poison cocktail I've had thus far.] For anyone who is curious here's the list of what it takes to get through this cocktail - the first three are the poisons, the rest are to deal with side effects: 5FU, Epirubicin, Cytoxin, tagamet IV, pepsid AC [daily till I'm all done], dexamethasone, emend, [an IV anti-nasia drug I've forgotten the name of], prochlorperzine, kytril, ativan, and my dear friend colace.A bit much, don't you think?! This round went about the same or a tad better than last - I traded the Friday night nausia for an Ativan coma...fair trade I'd say. Been fairly productive between couch potato episodes today, finally started some thank you cards. When I was writing them it dawned on me that I was diagnosed exactly three months ago - seems like so much longer than that. So many thank you's are owed for three months time!
For most of the day I was by far the youngest again, at least a 20 year gap and no, I'm not hedging on my age. Hard to interpret what that feels like really, sometimes I wonder where the young ones are, I can't be the only one - from my internet boards I know I'm not. Just seems like it on treatment days. There was this one man making us all nuts, asking a million times if it's ok to take his xanax, and then when the MD [appropriately sensing xanax wasn't going to cut it] offered a daily anti-anxiety med he became irate and asked me if I took a drug daily to calm me down - I told him without looking up from my laptop "No, I do therapy and guided imagery" - I wasn't the only one who chuckled when he promptly shut up! Score one for the young 'un!
Hope everyone has a good weekend, I see the oncologist Tuesday to discuss the second half of the poison journey to kill this disease - this one is supposed to be more about soreness and fatique than nausia and mouth issues - we'll see! Regardless, halfway DONE is a nicer place to be.
Wednesday, February 18, 2009 6:36 PM, EST
All went well with the oncologist - he is very encouraged by the fact that the tumor can not be felt by hand anymore [this was a clear marble before, felt it easily, now cannot feel a thing] especially for the type tumor it is. He basically said this is best case scenario for this point in chemo, now it is time to finish the job [the last 4 rounds of chemo] and get the gene test to decide on surgery needs. The gene center and my HR person are currently fighting with insurance to get the test approved, once it does it only takes two weeks for results. Then I'll know what the next leg entails. So, certainly an encouraging halfway report - I'll take "best case response" to chemo!
Chemo wise he swears there's no nausia with the next drug, but more serious fatigue...I've read about other side effects as well, we'll see which ones my body picks out. Until then I enjoy the good weeks and try to stay cootie free while the rest of this city seems to have sinus infections and a nasty cough. Ick. Next up: Blood counts Friday, next round 3/10/09. Later all!!
Friday, February 20, 2009 6:21 PM, EST
Busy week, with more good news. After getting the denial for my BRCA test [the genetic test] I asked my HR person at work for help. Two days later I find out she has worked with our CEO, the insurance company, the insurance broker and probably others and wrangled an exeption to the rule that was created to help insurance companies deny these things in the first place - in other words, my employer went to bat for me and got the thing done - I will get to have the genetic test in a couple of weeks. This was one of those milestone moments that halted me for a bit - I will soon know what surgery I need to have...a closer step to the end of this road. Hard to express what a pick me up this one was, just at the time during the week when my counts must have dropped b/c I was so tired I could have curled up in the middle of the Watterson and slept for hours given the chance. [My counts today were low, but not quarantine or medicine low - so I am hopefully already rebounding.] So once again I am saying "thanks" and it just doesn't seem to cover. Somehow from this disease has come this acute awareness of how fortunate I am - I'm sure there are so many others battling this same monster without the help I have had...very humbling. So I go into the good weeks really feeling like I'm in the second half of this fight, with an end in sight. Not a bad finsh to a very busy week!
No more FEC!!!! [The name of the quality poison cocktail I've had thus far.] For anyone who is curious here's the list of what it takes to get through this cocktail - the first three are the poisons, the rest are to deal with side effects: 5FU, Epirubicin, Cytoxin, tagamet IV, pepsid AC [daily till I'm all done], dexamethasone, emend, [an IV anti-nasia drug I've forgotten the name of], prochlorperzine, kytril, ativan, and my dear friend colace.A bit much, don't you think?! This round went about the same or a tad better than last - I traded the Friday night nausia for an Ativan coma...fair trade I'd say. Been fairly productive between couch potato episodes today, finally started some thank you cards. When I was writing them it dawned on me that I was diagnosed exactly three months ago - seems like so much longer than that. So many thank you's are owed for three months time!
For most of the day I was by far the youngest again, at least a 20 year gap and no, I'm not hedging on my age. Hard to interpret what that feels like really, sometimes I wonder where the young ones are, I can't be the only one - from my internet boards I know I'm not. Just seems like it on treatment days. There was this one man making us all nuts, asking a million times if it's ok to take his xanax, and then when the MD [appropriately sensing xanax wasn't going to cut it] offered a daily anti-anxiety med he became irate and asked me if I took a drug daily to calm me down - I told him without looking up from my laptop "No, I do therapy and guided imagery" - I wasn't the only one who chuckled when he promptly shut up! Score one for the young 'un!
Hope everyone has a good weekend, I see the oncologist Tuesday to discuss the second half of the poison journey to kill this disease - this one is supposed to be more about soreness and fatique than nausia and mouth issues - we'll see! Regardless, halfway DONE is a nicer place to be.
Wednesday, February 18, 2009 6:36 PM, EST
All went well with the oncologist - he is very encouraged by the fact that the tumor can not be felt by hand anymore [this was a clear marble before, felt it easily, now cannot feel a thing] especially for the type tumor it is. He basically said this is best case scenario for this point in chemo, now it is time to finish the job [the last 4 rounds of chemo] and get the gene test to decide on surgery needs. The gene center and my HR person are currently fighting with insurance to get the test approved, once it does it only takes two weeks for results. Then I'll know what the next leg entails. So, certainly an encouraging halfway report - I'll take "best case response" to chemo!
Chemo wise he swears there's no nausia with the next drug, but more serious fatigue...I've read about other side effects as well, we'll see which ones my body picks out. Until then I enjoy the good weeks and try to stay cootie free while the rest of this city seems to have sinus infections and a nasty cough. Ick. Next up: Blood counts Friday, next round 3/10/09. Later all!!
Friday, February 20, 2009 6:21 PM, EST
Busy week, with more good news. After getting the denial for my BRCA test [the genetic test] I asked my HR person at work for help. Two days later I find out she has worked with our CEO, the insurance company, the insurance broker and probably others and wrangled an exeption to the rule that was created to help insurance companies deny these things in the first place - in other words, my employer went to bat for me and got the thing done - I will get to have the genetic test in a couple of weeks. This was one of those milestone moments that halted me for a bit - I will soon know what surgery I need to have...a closer step to the end of this road. Hard to express what a pick me up this one was, just at the time during the week when my counts must have dropped b/c I was so tired I could have curled up in the middle of the Watterson and slept for hours given the chance. [My counts today were low, but not quarantine or medicine low - so I am hopefully already rebounding.] So once again I am saying "thanks" and it just doesn't seem to cover. Somehow from this disease has come this acute awareness of how fortunate I am - I'm sure there are so many others battling this same monster without the help I have had...very humbling. So I go into the good weeks really feeling like I'm in the second half of this fight, with an end in sight. Not a bad finsh to a very busy week!
Feb 4 - 14 2009
Wednesday, February 4, 2009 10:05 AM, EST
The other night my family was at a late dinner and I was joking about my latest drag queen antics [also known as my ever evolving morning make up routine resulting from chemo induced bad skin and hairlessness] and apparently there was a woman across the room who noticed the tell all "hat instead of hair" I was sporting, and she says to my brother "What's her name, does she have cancer?" When my brother answered her, she said "Me too - Tell her I will say a prayer for her". Total stranger. Not sure If I'll ever get used to that. I guess once the makeup is on and the baldie [as Casey calls my head] is covered, I forget I look different to the outside world, and it is quite evident why that is. Never going to turn down an extra prayer though!
I never really reported after the last MD appt - counts were better - low, but not quarantine low. One last round of FEC and we are tweaking the meds one more time - I had to laugh, they are giving me Ativan before I leave this time, so I'll either not have to crawl into a hole as soon as I get home from treatment, or I'll at least feel alot better about it... Certainly can't hurt! Still waiting on insurance to approve the gene test - speaking of insurance, I think I past $30,000 of claims sent in already - apparently cancer isn't cheap! Next Friday marks the halfway done with chemo mark - after that I start a new drug, which supposedly isn't as rough as this one - we'll see how that works out, regardless, halfway done will be a good place to be. Stay warm all!!
Thursday, February 12, 2009 8:57 AM, EST
Tomorrow marks the halfway point - halfway done with chemo...a nice milestone for a change, getting a bit tired of the other ones!! In theory, the next drug is supposed to be more tolerable, more of a fatigue issue than the sickness that this one brought, but given my first round experience with this one, I'll not get my hopes up too high for an easy ride. Seems like everything with this disease has a touch of irony, or one more "kick in the pants" - this time it seems it is when I finally get this poison under control, and I get used to life on this chemo, now it is time to change the game. Oh well, another challenge in letting go of my control freak tendencies [yeah I know - good luck with that!]. So the round this week should be similar to the last two, go to treatment, go home and sleep off the crud, start to crawl out of the hole sometime Saturday...at least I get Ativan this time [why did they hold back??] so I will at least feel better about the whole ordeal! Still waiting on the approval from insurance for the BRCA 1-2 test [gene test], I gave a nudge to the gene center this AM since my timeline is finally on the downward slope towards surgery, and getting this crap out of me for good.
The picture of Casey is when we went to the zoo with a friend last weekend - the Lorakeets were NUTS and went after Casey and I like crazy - maybe the fact that I was wearing bright green had something to do with it. Logan was none to pleased with our feathered friends - I wasn't particularly thrilled myself, especially when I got peed on...
Hope everyone has a good weekend, thanks for all the mojo, prayers, food [still some inthe freezer!] and overall good cheer. I'll check in when I come out of the hole!
Saturday, February 14, 2009 4:15 PM, EST
No more FEC!!!! [The name of the quality poison cocktail I've had thus far.] For anyone who is curious here's the list of what it takes to get through this cocktail - the first three are the poisons, the rest are to deal with side effects: 5FU, Epirubicin, Cytoxin, tagamet IV, pepsid AC [daily till I'm all done], dexamethasone, emend, [an IV anti-nasia drug I've forgotten the name of], prochlorperzine, kytril, ativan, and my dear friend colace.A bit much, don't you think?! This round went about the same or a tad better than last - I traded the Friday night nausia for an Ativan coma...fair trade I'd say. Been fairly productive between couch potato episodes today, finally started some thank you cards. When I was writing them it dawned on me that I was diagnosed exactly three months ago - seems like so much longer than that. So many thank you's are owed for three months time!
For most of the day I was by far the youngest again, at least a 20 year gap and no, I'm not hedging on my age. Hard to interpret what that feels like really, sometimes I wonder where the young ones are, I can't be the only one - from my internet boards I know I'm not. Just seems like it on treatment days. There was this one man making us all nuts, asking a million times if it's ok to take his xanax, and then when the MD [appropriately sensing xanax wasn't going to cut it] offered a daily anti-anxiety med he became irate and asked me if I took a drug daily to calm me down - I told him without looking up from my laptop "No, I do therapy and guided imagery" - I wasn't the only one who chuckled when he promptly shut up! Score one for the young 'un!
Hope everyone has a good weekend, I see the oncologist Tuesday to discuss the second half of the poison journey to kill this disease - this one is supposed to be more about soreness and fatique than nausia and mouth issues - we'll see! Regardless, halfway DONE is a nicer place to be.
The other night my family was at a late dinner and I was joking about my latest drag queen antics [also known as my ever evolving morning make up routine resulting from chemo induced bad skin and hairlessness] and apparently there was a woman across the room who noticed the tell all "hat instead of hair" I was sporting, and she says to my brother "What's her name, does she have cancer?" When my brother answered her, she said "Me too - Tell her I will say a prayer for her". Total stranger. Not sure If I'll ever get used to that. I guess once the makeup is on and the baldie [as Casey calls my head] is covered, I forget I look different to the outside world, and it is quite evident why that is. Never going to turn down an extra prayer though!
I never really reported after the last MD appt - counts were better - low, but not quarantine low. One last round of FEC and we are tweaking the meds one more time - I had to laugh, they are giving me Ativan before I leave this time, so I'll either not have to crawl into a hole as soon as I get home from treatment, or I'll at least feel alot better about it... Certainly can't hurt! Still waiting on insurance to approve the gene test - speaking of insurance, I think I past $30,000 of claims sent in already - apparently cancer isn't cheap! Next Friday marks the halfway done with chemo mark - after that I start a new drug, which supposedly isn't as rough as this one - we'll see how that works out, regardless, halfway done will be a good place to be. Stay warm all!!
Thursday, February 12, 2009 8:57 AM, EST
Tomorrow marks the halfway point - halfway done with chemo...a nice milestone for a change, getting a bit tired of the other ones!! In theory, the next drug is supposed to be more tolerable, more of a fatigue issue than the sickness that this one brought, but given my first round experience with this one, I'll not get my hopes up too high for an easy ride. Seems like everything with this disease has a touch of irony, or one more "kick in the pants" - this time it seems it is when I finally get this poison under control, and I get used to life on this chemo, now it is time to change the game. Oh well, another challenge in letting go of my control freak tendencies [yeah I know - good luck with that!]. So the round this week should be similar to the last two, go to treatment, go home and sleep off the crud, start to crawl out of the hole sometime Saturday...at least I get Ativan this time [why did they hold back??] so I will at least feel better about the whole ordeal! Still waiting on the approval from insurance for the BRCA 1-2 test [gene test], I gave a nudge to the gene center this AM since my timeline is finally on the downward slope towards surgery, and getting this crap out of me for good.
The picture of Casey is when we went to the zoo with a friend last weekend - the Lorakeets were NUTS and went after Casey and I like crazy - maybe the fact that I was wearing bright green had something to do with it. Logan was none to pleased with our feathered friends - I wasn't particularly thrilled myself, especially when I got peed on...
Hope everyone has a good weekend, thanks for all the mojo, prayers, food [still some inthe freezer!] and overall good cheer. I'll check in when I come out of the hole!
Saturday, February 14, 2009 4:15 PM, EST
No more FEC!!!! [The name of the quality poison cocktail I've had thus far.] For anyone who is curious here's the list of what it takes to get through this cocktail - the first three are the poisons, the rest are to deal with side effects: 5FU, Epirubicin, Cytoxin, tagamet IV, pepsid AC [daily till I'm all done], dexamethasone, emend, [an IV anti-nasia drug I've forgotten the name of], prochlorperzine, kytril, ativan, and my dear friend colace.A bit much, don't you think?! This round went about the same or a tad better than last - I traded the Friday night nausia for an Ativan coma...fair trade I'd say. Been fairly productive between couch potato episodes today, finally started some thank you cards. When I was writing them it dawned on me that I was diagnosed exactly three months ago - seems like so much longer than that. So many thank you's are owed for three months time!
For most of the day I was by far the youngest again, at least a 20 year gap and no, I'm not hedging on my age. Hard to interpret what that feels like really, sometimes I wonder where the young ones are, I can't be the only one - from my internet boards I know I'm not. Just seems like it on treatment days. There was this one man making us all nuts, asking a million times if it's ok to take his xanax, and then when the MD [appropriately sensing xanax wasn't going to cut it] offered a daily anti-anxiety med he became irate and asked me if I took a drug daily to calm me down - I told him without looking up from my laptop "No, I do therapy and guided imagery" - I wasn't the only one who chuckled when he promptly shut up! Score one for the young 'un!
Hope everyone has a good weekend, I see the oncologist Tuesday to discuss the second half of the poison journey to kill this disease - this one is supposed to be more about soreness and fatique than nausia and mouth issues - we'll see! Regardless, halfway DONE is a nicer place to be.
Jan 22 - Jan 30 2009
Thursday, January 22, 2009 10:07 AM, EST
Countdown to round three. Just as my skin is starting to clear, I can taste food, I can eat fruits and veggies, the headaches are gone...time to climb back in the gauntlet. SO armed with guided imagery, energy work [i.e.voodoo - great stuff], heartburn meds, anti-nausia meds, steroids, posicles, ginger ale, bread & crackers in the kitchen, kids occupied for the weekend, fresh batteries in the remote...ready to go. We'll see how the arsonal holds up. Though I dread each treatment, there is value in counting down...after this I'll have one more go round with this drug - then I can say I'm halfway done. The treatment room is a surreal place to spend your day - never know what blend of people will be there - though I am consistently by far the youngest with breast cancer, there was a guy in his twenties there last time. Some of the older folks are a riot though - they've seen enough of this world to not let a disease break their spirit - they can be more sarcastic and irreverant than me, which makes the time pass well. Then there's the terrified ones, whether it's the patients, or the people with them trying to act like they are fine with this bizzarre world...I find myself trying to smile bigger and perk up for them - you never know what the back story is with the quiet ones. It does give me a clear awareness of how hopeful my scenario is, when you spend the day with those with stage 4 disease, painful disease, or a spirit that is just spent. I, of course try to stick by the jokesters, and am armed with a laptop and ipod to pass the time for those times when the room gets too quiet. They need to invest in those TV's like at the dentist...or maybe I am just too dependant on distractions to pass the time [cut me some slack - 7 hours is a LONG time!!]. Have a good weekend - send good mojo my way - I'll check in when I come out the other side...
Saturday, January 24, 2009 3:57 PM, EST
Well, I am hoping I am not jinxing myself by saying this - but I am actually faring a bit better this round...managed to shower and eat before 12n - a vast difference from the last two rounds. Still have the light and noise sensitivity and "food" is soup - but hey, its calories and hydration. I'll take it. Granted, yesterday I was loaded up with 4 anti-nausia drugs, two antacids, steroids...in addition to the 3 poisons...so I guess by sheer numbers the good meds finally are making a dent in the bad ones. A new kick in the tail however - had my first hot flash today...yes, I am 36 and had my first hot flash. And I am such a dork I took my temperature 3 times thinking I was getting sick before I let myself remember a recent warning from my oncology nurse practitioner that the flashes would be here soon...this same woman had my hair loss pegged down to the day. Guess I should mark her words next time. Thank God [and Lynn and Beth and Mel and others] for all the scarves I have now b/c no way will some of my hats or a hot wig ever work if more of those flashes are on the horizon - I'd be a sweaty mess!! [OK, maybe TMI, but you all seem to like the real me - so here she is - bald, barfy, now steamy...thank God for accessories and make up!] Thanks again for all the prayers, mojo, jokes...and normalcy in very abnormal times. It helps each round more than you'll know. Being able to have decent meals for the kids & Chris [he makes it home a bit late in the evenings] when I can hardly think of a food I want to eat gives the boys a needed bit of normal. Well, back to my chicken noodle, we'll see if I upgrade to rice tonight!!
Friday, January 30, 2009 9:25 AM, EST
So as we dig out from this crazy ice storm, and find out who has power, who is still out, who showed up for work, and restlessly wait for this town to get back to normal, I am tremendously thankful that we have power, and that mom is at my house with the kids so I could escape. I love my boys, you know that, but good Lord - 3 days trapped in with 2 and 7 year old boys whose energy never seems to lessen is enough to send the most dedicated mom running back to the office! Kudos to Leener for making me bundle up the kids the other day to get out in the snow [I was so not feeling up to playing in the snow, and me falling on ice is not an option thanks to chemo love] the boys had a good time - I'll get pics up soon. Too bad Leener has to have new bruises for her efforts - I guess somebody has to remember what snow days are about! Chemo wise, I'm coming back to life, side effects no worse than last time but always changing just enough to keep me on my toes, I get blood counts today to see how I'm doing there...hope everyone stays warm, I'll check in again soon!
Countdown to round three. Just as my skin is starting to clear, I can taste food, I can eat fruits and veggies, the headaches are gone...time to climb back in the gauntlet. SO armed with guided imagery, energy work [i.e.voodoo - great stuff], heartburn meds, anti-nausia meds, steroids, posicles, ginger ale, bread & crackers in the kitchen, kids occupied for the weekend, fresh batteries in the remote...ready to go. We'll see how the arsonal holds up. Though I dread each treatment, there is value in counting down...after this I'll have one more go round with this drug - then I can say I'm halfway done. The treatment room is a surreal place to spend your day - never know what blend of people will be there - though I am consistently by far the youngest with breast cancer, there was a guy in his twenties there last time. Some of the older folks are a riot though - they've seen enough of this world to not let a disease break their spirit - they can be more sarcastic and irreverant than me, which makes the time pass well. Then there's the terrified ones, whether it's the patients, or the people with them trying to act like they are fine with this bizzarre world...I find myself trying to smile bigger and perk up for them - you never know what the back story is with the quiet ones. It does give me a clear awareness of how hopeful my scenario is, when you spend the day with those with stage 4 disease, painful disease, or a spirit that is just spent. I, of course try to stick by the jokesters, and am armed with a laptop and ipod to pass the time for those times when the room gets too quiet. They need to invest in those TV's like at the dentist...or maybe I am just too dependant on distractions to pass the time [cut me some slack - 7 hours is a LONG time!!]. Have a good weekend - send good mojo my way - I'll check in when I come out the other side...
Saturday, January 24, 2009 3:57 PM, EST
Well, I am hoping I am not jinxing myself by saying this - but I am actually faring a bit better this round...managed to shower and eat before 12n - a vast difference from the last two rounds. Still have the light and noise sensitivity and "food" is soup - but hey, its calories and hydration. I'll take it. Granted, yesterday I was loaded up with 4 anti-nausia drugs, two antacids, steroids...in addition to the 3 poisons...so I guess by sheer numbers the good meds finally are making a dent in the bad ones. A new kick in the tail however - had my first hot flash today...yes, I am 36 and had my first hot flash. And I am such a dork I took my temperature 3 times thinking I was getting sick before I let myself remember a recent warning from my oncology nurse practitioner that the flashes would be here soon...this same woman had my hair loss pegged down to the day. Guess I should mark her words next time. Thank God [and Lynn and Beth and Mel and others] for all the scarves I have now b/c no way will some of my hats or a hot wig ever work if more of those flashes are on the horizon - I'd be a sweaty mess!! [OK, maybe TMI, but you all seem to like the real me - so here she is - bald, barfy, now steamy...thank God for accessories and make up!] Thanks again for all the prayers, mojo, jokes...and normalcy in very abnormal times. It helps each round more than you'll know. Being able to have decent meals for the kids & Chris [he makes it home a bit late in the evenings] when I can hardly think of a food I want to eat gives the boys a needed bit of normal. Well, back to my chicken noodle, we'll see if I upgrade to rice tonight!!
Friday, January 30, 2009 9:25 AM, EST
So as we dig out from this crazy ice storm, and find out who has power, who is still out, who showed up for work, and restlessly wait for this town to get back to normal, I am tremendously thankful that we have power, and that mom is at my house with the kids so I could escape. I love my boys, you know that, but good Lord - 3 days trapped in with 2 and 7 year old boys whose energy never seems to lessen is enough to send the most dedicated mom running back to the office! Kudos to Leener for making me bundle up the kids the other day to get out in the snow [I was so not feeling up to playing in the snow, and me falling on ice is not an option thanks to chemo love] the boys had a good time - I'll get pics up soon. Too bad Leener has to have new bruises for her efforts - I guess somebody has to remember what snow days are about! Chemo wise, I'm coming back to life, side effects no worse than last time but always changing just enough to keep me on my toes, I get blood counts today to see how I'm doing there...hope everyone stays warm, I'll check in again soon!
Jan 5 - 15 2009
Monday, January 5, 2009 9:03 AM, EST
After being locked in my mother's basement with Casey's Karate teacher for an hour Saturday night [not nearly as Desperate Housewives as it sounds], I attempted to have a conversation with my mom about simplifying things...that it really is ok if every routine doesn't get met. I can't say I got anywhere with that, I come from a long line of anxious perfectionsists - at least you know I get it honest. Lord knows I am learning the "pick your battles" deal the hard way - and so is anyone around me on a regular basis. My 7 year old has done very well adjusting to things just being a bit different - he has learned that being tossed around family members has a serious benefit to him b/c they spoil him rotten! Co-workers have experienced me coming to meetings w/o key paperwork, and politely emailed it in w/o a word...my boss has heard me say "I'll get that done today", and not said a word when it came to her desk two days later. Eileen has been kicked out of my house simply b/c I was done with the noise...all gifts in their own right to someone who is trying to readjust priorities! Maybe mom will someday accept the liberation that getting down to basics brings...ok, maybe not. Regardless, if I were to have a New Years Resolution, it would be to clean up, and organize, not to get everything done, but to get what I need and want done. Wish me luck!
Cancer wise, coming off this round is going better than the first, I plan to enjoy the good weeks coming,and figure out how to eat [again]...going back in is always going to be the challenge - at least I can say I am 25% done with Chemo. Till then, Logie has a birthday coming up...whew, talk about spoiled!
Friday, January 9, 2009 4:41 PM, EST
Hi All - Dr. updates for the week. I now have confirmation that I am not just wishiful thinking, but the tumor is "drastically" reduced, according to the surgeon and oncology nurse practitioner [and to me]. So we know the poison fits the demon, and this chemo is killing this cancer - a perk of doing chemo first, I get to know that it is working. We tweaked the plan a bit more for round three, but if this is as good as it gets, at least I know it's doable. I have felt mostly human this week, and even managed to catch up on drastically late paperwork and reached the bottom of the stacks of papers on my desk [and on my shelves, on file racks etc...] for the first time since this started. The irony is, just as I am all proud of myself that I have this round licked, my Dr. appt takes forever today, my port took forever to work [how hard should it be to get blood out of your jugular vein??], and I found out my blood counts are in the dumper. Now melodramatic as that sounds, it is not shocking that the counts are bad[leaving me prone to infection], I just thought I would know it if they were. So now I'm on antibiotics and supposed to avoid all things germy...seriously...I have two kids, I work with foster kids, and I'm supposed to stay germ free? If I wasn't a hypochondriac before, this might just do it for me. If anyone knows how to make a two and a seven year old less cootie ridden in Louisville in January, please feel free to share your tricks. Until I figure that out, time to restock my favorite Bath and Body Antibacterial collection so at least I'll smell nice while obsessively washing my hands.
Thursday, January 15, 2009 8:50 AM, EST
Good morning all - not much new...these are the good days before gearing up for round three. So it's be a good little chemo patient, take my meds,stay hydrated [far harder than it sounds], and try to salvage my skin [raging case of chemo acne] before we flood my already agitated body with more poison. No major fallouts from the low blood counts [other than the acne] - just the knowledge that I am not superhuman and my blood drops like most others do, so I have to schedule wisely. [Hate these reminders that I am indeed not superhuman]. Logie turns 2 today, - hard to believe - even harder to believe what a bullheaded fearless little spirit he is...yikes, the teen years are gonna be interesting with this one! The showdown last night was "No Mommy want sucker RIGHT NOW" and the glass breaking screetch that followed when I said no...can't imagine where he gets that attitude. :) Maybe that will work for me... "No Dr. - Want better meds RIGHT NOW". I'll let you know how it works if I get that desperate.
After being locked in my mother's basement with Casey's Karate teacher for an hour Saturday night [not nearly as Desperate Housewives as it sounds], I attempted to have a conversation with my mom about simplifying things...that it really is ok if every routine doesn't get met. I can't say I got anywhere with that, I come from a long line of anxious perfectionsists - at least you know I get it honest. Lord knows I am learning the "pick your battles" deal the hard way - and so is anyone around me on a regular basis. My 7 year old has done very well adjusting to things just being a bit different - he has learned that being tossed around family members has a serious benefit to him b/c they spoil him rotten! Co-workers have experienced me coming to meetings w/o key paperwork, and politely emailed it in w/o a word...my boss has heard me say "I'll get that done today", and not said a word when it came to her desk two days later. Eileen has been kicked out of my house simply b/c I was done with the noise...all gifts in their own right to someone who is trying to readjust priorities! Maybe mom will someday accept the liberation that getting down to basics brings...ok, maybe not. Regardless, if I were to have a New Years Resolution, it would be to clean up, and organize, not to get everything done, but to get what I need and want done. Wish me luck!
Cancer wise, coming off this round is going better than the first, I plan to enjoy the good weeks coming,and figure out how to eat [again]...going back in is always going to be the challenge - at least I can say I am 25% done with Chemo. Till then, Logie has a birthday coming up...whew, talk about spoiled!
Friday, January 9, 2009 4:41 PM, EST
Hi All - Dr. updates for the week. I now have confirmation that I am not just wishiful thinking, but the tumor is "drastically" reduced, according to the surgeon and oncology nurse practitioner [and to me]. So we know the poison fits the demon, and this chemo is killing this cancer - a perk of doing chemo first, I get to know that it is working. We tweaked the plan a bit more for round three, but if this is as good as it gets, at least I know it's doable. I have felt mostly human this week, and even managed to catch up on drastically late paperwork and reached the bottom of the stacks of papers on my desk [and on my shelves, on file racks etc...] for the first time since this started. The irony is, just as I am all proud of myself that I have this round licked, my Dr. appt takes forever today, my port took forever to work [how hard should it be to get blood out of your jugular vein??], and I found out my blood counts are in the dumper. Now melodramatic as that sounds, it is not shocking that the counts are bad[leaving me prone to infection], I just thought I would know it if they were. So now I'm on antibiotics and supposed to avoid all things germy...seriously...I have two kids, I work with foster kids, and I'm supposed to stay germ free? If I wasn't a hypochondriac before, this might just do it for me. If anyone knows how to make a two and a seven year old less cootie ridden in Louisville in January, please feel free to share your tricks. Until I figure that out, time to restock my favorite Bath and Body Antibacterial collection so at least I'll smell nice while obsessively washing my hands.
Thursday, January 15, 2009 8:50 AM, EST
Good morning all - not much new...these are the good days before gearing up for round three. So it's be a good little chemo patient, take my meds,stay hydrated [far harder than it sounds], and try to salvage my skin [raging case of chemo acne] before we flood my already agitated body with more poison. No major fallouts from the low blood counts [other than the acne] - just the knowledge that I am not superhuman and my blood drops like most others do, so I have to schedule wisely. [Hate these reminders that I am indeed not superhuman]. Logie turns 2 today, - hard to believe - even harder to believe what a bullheaded fearless little spirit he is...yikes, the teen years are gonna be interesting with this one! The showdown last night was "No Mommy want sucker RIGHT NOW" and the glass breaking screetch that followed when I said no...can't imagine where he gets that attitude. :) Maybe that will work for me... "No Dr. - Want better meds RIGHT NOW". I'll let you know how it works if I get that desperate.
Dec 28 , 2008 - Jan 2 2009
Sunday, December 28, 2008 4:38 PM, EST
Hope everyone survived the holiday madness...I believe Logan thinks everyone is supposed to bring gifts every day now, and Casey has been glued to his Wii - signs of a good ho ho ho I think! There are a few new pictures in the photo section - check out my cuties! The kids are a great distraction, I'm not going to lie and say there weren't some moments where I didn't have a bit of a pity party b/c this holiday was tainted by cancer...because there were...but fortunately a nearly two year old and a seven year old just doesn't allow for much of that. I am just thankful the chemo cycle left Christmas week as the good week. Can't say the same for New Years, but as I am flopped on my sofa this New Years Eve I will be cheering on 2009 as the year of my cure. Well I am off to finish my pre-chemo gallon of fluids, and to get the kids ready for Grandma's house [let the spoiling continue!]...don't be alarmed if it takes a couple of days to check in again, plan A is to sleep it off as much as possible!
Wednesday, December 31, 2008 12:24 PM, EST
Hi all - happy New Years Eve! I guess the vote on round two is currently mixed, changing up meds was somewhat a success in that the intensity for day one was definately less, but the downside is the nausia started earlier and is lasting longer. Back to the battle for fluids and calories again...hopefully coming around today though. Definately not as foggy as last time, just weak from not being able to eat [rather ironic for a big girl to be forcing calories in!].Overall still better than the panicky wanting to chew my arm off to make it stop from round one. Halfway done with this drug [5FU being the kicker - yeah, FU!!!] then I switch to 4 rounds af a new adventure. Other good news is my bloodwork had returned to normal between rounds [usually the body/bloodwork is a bit lacking when you go bak in] so I am a good rebounder so far, just need to get the side effect thing in gear. At least I can say this wasn't worse at this point...
Everyone be safe for their New Years bashes, may 2009 be the year for my cure, and for my family's strength to bring it around. Keep the prayers and mojo coming, it means alot!
Next up: Consult with the surgeon Monday to follow up on tumor and port; next round 1/23/09 [bumped to get me back on Fridays, gives me 4 more good days!]; waiting on insurance approval to get the genetic test done [standard insurance BS]
Friday, January 2, 2009 9:02 AM, EST
Hi all, back to work today...on the upside this round left me less dizzy and lightheaded, on the downside food is an all new issue and I am still every bit as scatterbrained. Lesson learned - write everything down!! Oh well, just another example of the Powers that be insisting I let go of my need for a little predictability in my life, guess I better get used to it! New Years was good, Casey and Chris stayed up late at the neighbors, Logie and I were asleep on the couch by ten. The house is nuts with all the Christmas stuff, hard to beleive Casey is back to school on Monday! Logie turns 2 this month, fortunately a two year old party has little expectation other than cousins, cake and presents - easy for even the scatterbrained to pull off! Time to get some work done, have a good weekend, thanks for checking in!
Hope everyone survived the holiday madness...I believe Logan thinks everyone is supposed to bring gifts every day now, and Casey has been glued to his Wii - signs of a good ho ho ho I think! There are a few new pictures in the photo section - check out my cuties! The kids are a great distraction, I'm not going to lie and say there weren't some moments where I didn't have a bit of a pity party b/c this holiday was tainted by cancer...because there were...but fortunately a nearly two year old and a seven year old just doesn't allow for much of that. I am just thankful the chemo cycle left Christmas week as the good week. Can't say the same for New Years, but as I am flopped on my sofa this New Years Eve I will be cheering on 2009 as the year of my cure. Well I am off to finish my pre-chemo gallon of fluids, and to get the kids ready for Grandma's house [let the spoiling continue!]...don't be alarmed if it takes a couple of days to check in again, plan A is to sleep it off as much as possible!
Wednesday, December 31, 2008 12:24 PM, EST
Hi all - happy New Years Eve! I guess the vote on round two is currently mixed, changing up meds was somewhat a success in that the intensity for day one was definately less, but the downside is the nausia started earlier and is lasting longer. Back to the battle for fluids and calories again...hopefully coming around today though. Definately not as foggy as last time, just weak from not being able to eat [rather ironic for a big girl to be forcing calories in!].Overall still better than the panicky wanting to chew my arm off to make it stop from round one. Halfway done with this drug [5FU being the kicker - yeah, FU!!!] then I switch to 4 rounds af a new adventure. Other good news is my bloodwork had returned to normal between rounds [usually the body/bloodwork is a bit lacking when you go bak in] so I am a good rebounder so far, just need to get the side effect thing in gear. At least I can say this wasn't worse at this point...
Everyone be safe for their New Years bashes, may 2009 be the year for my cure, and for my family's strength to bring it around. Keep the prayers and mojo coming, it means alot!
Next up: Consult with the surgeon Monday to follow up on tumor and port; next round 1/23/09 [bumped to get me back on Fridays, gives me 4 more good days!]; waiting on insurance approval to get the genetic test done [standard insurance BS]
Friday, January 2, 2009 9:02 AM, EST
Hi all, back to work today...on the upside this round left me less dizzy and lightheaded, on the downside food is an all new issue and I am still every bit as scatterbrained. Lesson learned - write everything down!! Oh well, just another example of the Powers that be insisting I let go of my need for a little predictability in my life, guess I better get used to it! New Years was good, Casey and Chris stayed up late at the neighbors, Logie and I were asleep on the couch by ten. The house is nuts with all the Christmas stuff, hard to beleive Casey is back to school on Monday! Logie turns 2 this month, fortunately a two year old party has little expectation other than cousins, cake and presents - easy for even the scatterbrained to pull off! Time to get some work done, have a good weekend, thanks for checking in!
Dec 14 - Dec 22 2008
Wednesday, December 17, 2008 9:39 AM, EST
You know that string on a shirt or a scarf that you can't help but pull and tug on even though you know it will pull and ruin the cloth, and you shouldn't pull it but you just HAVE to? That is now my head. I am at work doing paperwork at a dreadfully slow pace, and had an itch. There it was, the fateful first clump. Not broken hairs, mind you, but from the root. I have to keep my hands off it b/c Casey has his Christmas program today and his biggest fear is me showing up bald. I want to pull it though - feels good to tug it - like those damned packing poppers that you have to pop every one. So get ready people, I suspect tonight will be shaving night. SHIT - I seriously just pulled another 100 hairs out. Just need to make it to 2p with hair! Very strange, I was freaked for a second [remember the roller coaster?] but now I just want to pull it. It gets you right when you are feeling human again too - Monday and Tuesday were my most normal, now I have to learn how to decorate my head. Quite the party trick I have going here - trichotillomania gone awry. My mantra for the day - don't touch my head, don't touch my head...
Thursday, December 18, 2008 9:04 AM, CST
Bigger Balder Bitch?!?! Yikes. Brief low point last night - as I am sitting in my kitchen with Chris shaving my head, Logan walks in and gives us a look that I swear translates to "What the F*** are you all doing??" Much better high point that hapened just a bit later - I am on the couch, with both boys rubbing my buzzed head and giggling. Casey even said after just a couple of minutes, "That's not that bad, you can show up to my school that way" [a HUGE statement for him]. Today he said he liked my pirate hat [a.k.a. scarf]. SO am now a visual poster child fo those of us who should be technically too young to have this disease. If you don't mind, send the mojo Chris' way today - can't imagine the position he was in yesterday when I told him he had to shave it, and he had to do that day. He managed to do it even when I flinched the first 5 times he turned the clippers on. Dignity means alot with this very undignified disease, and shaving it off maintained a tad bit of mine. He held up, and held me up for that moment when I needed it. Another cancer milestone over, and once again - my boys rock!!
Monday, December 22, 2008 9:15 AM, EST
Medically not alot going on these days, my body is just generally a bit pissed off at this whole ordeal, and lets me know in unique ways. [Does anyone realize how important nose hairs are???] I am on the 7 day countdown to round 2 [ugh], and hopefully my body will rebound a bit more before going through the gauntlet again. People ask about the effects of chemo being cumulative, or of the agents getting stronger as time goes on - that is not quite the case but what I can see happening is that depending on how fast your body rebounds at the end of each cycle, you go back in a bit lagging, which doesn't set you up well to tolerate the next round.
Just in case I don't post I the next couple of days b/c of the holiday madness, I wanted to take the opportunity to send my most sincere thanks to all the posters, readers, prayers, lurkers, shoppers, babysitters, cooks, laugh makers, hat bringers, cheer leaders, planners, well wishers and overall lifesavers for getting me and my family through round one, and the seven to come. The past six weeks has brought more than anyone can be prepared for, and your support has let me focus on beating this, and raising my kids while doing so. Santa is alive and well from what I can see, and this little pink meeting place shows the true spirit of Christmas year round is alive and well too. Thanks again.
BTW - I am certain the tumor is already shrinking, I can't feel it as easily as before. Merry Christmas to me...
You know that string on a shirt or a scarf that you can't help but pull and tug on even though you know it will pull and ruin the cloth, and you shouldn't pull it but you just HAVE to? That is now my head. I am at work doing paperwork at a dreadfully slow pace, and had an itch. There it was, the fateful first clump. Not broken hairs, mind you, but from the root. I have to keep my hands off it b/c Casey has his Christmas program today and his biggest fear is me showing up bald. I want to pull it though - feels good to tug it - like those damned packing poppers that you have to pop every one. So get ready people, I suspect tonight will be shaving night. SHIT - I seriously just pulled another 100 hairs out. Just need to make it to 2p with hair! Very strange, I was freaked for a second [remember the roller coaster?] but now I just want to pull it. It gets you right when you are feeling human again too - Monday and Tuesday were my most normal, now I have to learn how to decorate my head. Quite the party trick I have going here - trichotillomania gone awry. My mantra for the day - don't touch my head, don't touch my head...
Thursday, December 18, 2008 9:04 AM, CST
Bigger Balder Bitch?!?! Yikes. Brief low point last night - as I am sitting in my kitchen with Chris shaving my head, Logan walks in and gives us a look that I swear translates to "What the F*** are you all doing??" Much better high point that hapened just a bit later - I am on the couch, with both boys rubbing my buzzed head and giggling. Casey even said after just a couple of minutes, "That's not that bad, you can show up to my school that way" [a HUGE statement for him]. Today he said he liked my pirate hat [a.k.a. scarf]. SO am now a visual poster child fo those of us who should be technically too young to have this disease. If you don't mind, send the mojo Chris' way today - can't imagine the position he was in yesterday when I told him he had to shave it, and he had to do that day. He managed to do it even when I flinched the first 5 times he turned the clippers on. Dignity means alot with this very undignified disease, and shaving it off maintained a tad bit of mine. He held up, and held me up for that moment when I needed it. Another cancer milestone over, and once again - my boys rock!!
Monday, December 22, 2008 9:15 AM, EST
Medically not alot going on these days, my body is just generally a bit pissed off at this whole ordeal, and lets me know in unique ways. [Does anyone realize how important nose hairs are???] I am on the 7 day countdown to round 2 [ugh], and hopefully my body will rebound a bit more before going through the gauntlet again. People ask about the effects of chemo being cumulative, or of the agents getting stronger as time goes on - that is not quite the case but what I can see happening is that depending on how fast your body rebounds at the end of each cycle, you go back in a bit lagging, which doesn't set you up well to tolerate the next round.
Just in case I don't post I the next couple of days b/c of the holiday madness, I wanted to take the opportunity to send my most sincere thanks to all the posters, readers, prayers, lurkers, shoppers, babysitters, cooks, laugh makers, hat bringers, cheer leaders, planners, well wishers and overall lifesavers for getting me and my family through round one, and the seven to come. The past six weeks has brought more than anyone can be prepared for, and your support has let me focus on beating this, and raising my kids while doing so. Santa is alive and well from what I can see, and this little pink meeting place shows the true spirit of Christmas year round is alive and well too. Thanks again.
BTW - I am certain the tumor is already shrinking, I can't feel it as easily as before. Merry Christmas to me...
Dec 10 - Dec 14 2008
Wednesday, December 10, 2008 11:40 AM, EST
Not sure if the "bring my brain to work" thing ever really panned out, but I'm here, and by lunch time I usually feel more like a human than a hot air balloon. Fortunately my appointment with the oncologist friday is in the afternoon, so he may not get assaulted with my version of round 1 since his was a bit more smooth than what I experienced. We had our Christmas party last night for the kids at work, Casey chatted Santa's ear off and Logan was all about the big red Elf, I'll post the picture when I get it. Not alot going on today - I am going to get my hair cut tomorrow [my poor hairdresser is going to freak out when I tell her to whack it off] so the transition to simpler morning routines begins. Have a good day all - hug your kids - there's no better pick me up!
Friday, December 12, 2008 2:11 PM, EST
Well I freaked out by 22 year old hairstylist, and God love her she got the job done without her hands shaking [I am so tired of freaking people out!!] so the do is now short. I am also quickly learning that I cannot tell the difference between chemo side effects and other stuff [and now I am more likely to get other stuff b/c of funkly blood counts]...what I thought was throat sores from chemo may have been tonsillitis, so maybe some of the food issue won't stay as bad. Hard to tell if chemo is eating me up, I caught a bug, or cancer has made me a hypochondriac. Who knows, my MD has a bunch of questions coming today! I need to give a shout out to the Power Food Corps, as Logan said "yummy yummy" to the pizza lasagna, and whoever made that pie definately gave me a boost yesterday afternoon when I needed something gooey. For those who know me at all, know that the control freak in me is going absolutely nuts as I try to reconfigure daily norms, and to make it worse I get the sense that I will figure it out and the game will change or the cycle will start over again - a very dirty trick to play on someone who is well accustomed to handling all her own business. I guess the next hurdle is when the hair actually goes, and dealing with everyone's resonse to that...Casey is so worried about it - I bet he doesn't realize I really am going to let him paint it [washable of course, he has a great imagination, and I cannot imagine what he will do with a human canvas!]. Have a good weekend!
Sunday, December 14, 2008 2:12 PM, EST
I'm not sure if the nurse practitioner I met with on Friday appreciated it when I started the conversation with "So, how come you guys just didn't go ahead and tell me I would move for about 18 hours after the first round?" Fortunately, she turned out to be almost as much of a straight shooter as me, she responded with a smile "Whether you believe me or not, everyone truly does respond differently, and we can't scare the crap out of everyone right off when we don't hardly know them". OK - fair enough [I guess]. She was very frank, though, and finally said out loud what I had learned through reading, which is that there is good news and bad news here - the good news is they are hitting this cancer hard, with a hard core run of agents [in part b/c I am young etc. and they can]...the bad news is my body is pissed off about it, and that won't change much. Granted we tweaked the game plan a bit, and have good friends with different approaches to build up my mental armory, and I won't be able to say I am shocked next time, so hopefully eliminating the surprise will at least take the emotionality out of it for the next three rounds until I switch chemicals. She also reitterrated the hair countdown, and warned since my body has been so reactive to everything else, the hair should go pretty quickly too. I am becoming aware of many people's discomfort with the fact I am not choosing wigs; and who knows, when I really see my bald head I may go running for one, but it is really interesting how other people react to your own choices. For now, it just seems easier and more fun to dress it instead of pretending there's hair there...we'll see how it goes. Anyway, back to the medical stuff, long story short is I am not a hypochondriac, and did not have tonsillitis, I just had an appropriately large reaction to a large dose of poison, but my blood counts were all good so hopefully that will tide me over for the next two weeks until we go again - which will fortunately be after Christmas. Till then I am hoping for good blood counts, no cooties, and short lines at the stores when I finally get around to Christmas shopping...
Not sure if the "bring my brain to work" thing ever really panned out, but I'm here, and by lunch time I usually feel more like a human than a hot air balloon. Fortunately my appointment with the oncologist friday is in the afternoon, so he may not get assaulted with my version of round 1 since his was a bit more smooth than what I experienced. We had our Christmas party last night for the kids at work, Casey chatted Santa's ear off and Logan was all about the big red Elf, I'll post the picture when I get it. Not alot going on today - I am going to get my hair cut tomorrow [my poor hairdresser is going to freak out when I tell her to whack it off] so the transition to simpler morning routines begins. Have a good day all - hug your kids - there's no better pick me up!
Friday, December 12, 2008 2:11 PM, EST
Well I freaked out by 22 year old hairstylist, and God love her she got the job done without her hands shaking [I am so tired of freaking people out!!] so the do is now short. I am also quickly learning that I cannot tell the difference between chemo side effects and other stuff [and now I am more likely to get other stuff b/c of funkly blood counts]...what I thought was throat sores from chemo may have been tonsillitis, so maybe some of the food issue won't stay as bad. Hard to tell if chemo is eating me up, I caught a bug, or cancer has made me a hypochondriac. Who knows, my MD has a bunch of questions coming today! I need to give a shout out to the Power Food Corps, as Logan said "yummy yummy" to the pizza lasagna, and whoever made that pie definately gave me a boost yesterday afternoon when I needed something gooey. For those who know me at all, know that the control freak in me is going absolutely nuts as I try to reconfigure daily norms, and to make it worse I get the sense that I will figure it out and the game will change or the cycle will start over again - a very dirty trick to play on someone who is well accustomed to handling all her own business. I guess the next hurdle is when the hair actually goes, and dealing with everyone's resonse to that...Casey is so worried about it - I bet he doesn't realize I really am going to let him paint it [washable of course, he has a great imagination, and I cannot imagine what he will do with a human canvas!]. Have a good weekend!
Sunday, December 14, 2008 2:12 PM, EST
I'm not sure if the nurse practitioner I met with on Friday appreciated it when I started the conversation with "So, how come you guys just didn't go ahead and tell me I would move for about 18 hours after the first round?" Fortunately, she turned out to be almost as much of a straight shooter as me, she responded with a smile "Whether you believe me or not, everyone truly does respond differently, and we can't scare the crap out of everyone right off when we don't hardly know them". OK - fair enough [I guess]. She was very frank, though, and finally said out loud what I had learned through reading, which is that there is good news and bad news here - the good news is they are hitting this cancer hard, with a hard core run of agents [in part b/c I am young etc. and they can]...the bad news is my body is pissed off about it, and that won't change much. Granted we tweaked the game plan a bit, and have good friends with different approaches to build up my mental armory, and I won't be able to say I am shocked next time, so hopefully eliminating the surprise will at least take the emotionality out of it for the next three rounds until I switch chemicals. She also reitterrated the hair countdown, and warned since my body has been so reactive to everything else, the hair should go pretty quickly too. I am becoming aware of many people's discomfort with the fact I am not choosing wigs; and who knows, when I really see my bald head I may go running for one, but it is really interesting how other people react to your own choices. For now, it just seems easier and more fun to dress it instead of pretending there's hair there...we'll see how it goes. Anyway, back to the medical stuff, long story short is I am not a hypochondriac, and did not have tonsillitis, I just had an appropriately large reaction to a large dose of poison, but my blood counts were all good so hopefully that will tide me over for the next two weeks until we go again - which will fortunately be after Christmas. Till then I am hoping for good blood counts, no cooties, and short lines at the stores when I finally get around to Christmas shopping...
Dec 4-Dec8 2008
Thursday, December 4, 2008 10:58 PM, EST
Do you remember that feeling you got as a kid the first time you got to the top of the hill on a really scary roller coaster ride? That part where the first cars have already headed downhill, and you are waiting to be pulled over the top and your stomach gives away that inkling of "Oh shit - what have I gotten myself into"...that's where I am tonight. Just a few cars back waiting my turn to be pulled down the hill, into one of those tunnels that you can't see the end of until you are through it.
The kids are asleep, I was too on the couch while watching Grey's Anatomy [the hallucinating Izzy storyline is getting a bit drawn out don't you think?] and when I got up to get everything ready for the morning that twinge hit in my stomach...oh shit, what am I in for now. Time to take a deep breath, drink my water like a good little chemo patient [have to hydrate for the day ahead] and remind myself the only way to get to the celebration at the end of the ride is to get in the car and get up the first hill. I'll let you all know how it goes!
Saturday, December 6, 2008 2:35 PM, EST
OK - so the fact that it took 24 hours for me to get to the computer kind of gives an you inkling as to what day one was like. Especially since my computer is 1 room over from the TV. On the upside - the scans are clear, so I am in stage 2, not stage 3 - a key survival and cure rate difference. The port is probably one of the best things invented - so the process is easy and painless.
The down side is side effects. I think I had things fairly well planned - no kids was a key idea - no way could I have been a mom yesterday, still not so much today, but maybe later [thanks grandma!]. Anyone who knows me at all, knows that not being able to function as a mom even if for a day is worse than the incapacitating nausia I felt last night...damned pride. I'm not sure what it was like for Chris to come home and do the right things and say the right things and still just have to sit back and watch - good thing the meds knocked me out a bit. From what I know, and from what is starting to happen, is I should start pulling out of the funk, and then other side effects kick in, like fatigue and funky blood counts etc., then I feel better, and then we go again on 12/29.
So for all you waiting in the wings, I get the feeling meals will be a good call, for my kids and Chris moreso than me, b/c I don't feel like eating nonetheless cooking, it will be nice on bad days not to worry about that. Thanks for all the cheerleading too, this hungover bitch needed that today! So I made it through day one, needless to say I'll be having a conversaiton with my oncologist about his "we hope you'll have no nausia" schtick b/c THAT surely is not how it worked out! For his sake hopefully I'll be feeling better by then!
Monday, December 8, 2008 11:18 AM, EST
Accomplishment for the day - I am at work. Goal for tomorrow - bring my brain to work and leave the heartburn at home. We'll just have to see how that goes. I am glad for the distraction of coming to work, and not sitting pitiful at home, and the boys needed to keep moving too. The countdown to "Mrs. Clean" has begun [my head, not my house] so thanks to those who have already supplied some baldy coverage, and I need to get a good short haircut this week. Even Chris has been poking the web for some eye catching hats. I don't have a very chipper response when people ask "so how did it go?" - I can pretty much say chemo sucks, but today is better than yesterday, and once I figure out how to eat, that will be a step in the right direction. I am very thankful for the well wishes and offers to help, I'll definately be taking advantage of that esp. as I figure out this cycle, so I can better prepare for round 2. For now, if anyone out there has a few extra brain cells they can spare, let's see if we can transfuse them this way, b/c I am definately a few short today!
Do you remember that feeling you got as a kid the first time you got to the top of the hill on a really scary roller coaster ride? That part where the first cars have already headed downhill, and you are waiting to be pulled over the top and your stomach gives away that inkling of "Oh shit - what have I gotten myself into"...that's where I am tonight. Just a few cars back waiting my turn to be pulled down the hill, into one of those tunnels that you can't see the end of until you are through it.
The kids are asleep, I was too on the couch while watching Grey's Anatomy [the hallucinating Izzy storyline is getting a bit drawn out don't you think?] and when I got up to get everything ready for the morning that twinge hit in my stomach...oh shit, what am I in for now. Time to take a deep breath, drink my water like a good little chemo patient [have to hydrate for the day ahead] and remind myself the only way to get to the celebration at the end of the ride is to get in the car and get up the first hill. I'll let you all know how it goes!
Saturday, December 6, 2008 2:35 PM, EST
OK - so the fact that it took 24 hours for me to get to the computer kind of gives an you inkling as to what day one was like. Especially since my computer is 1 room over from the TV. On the upside - the scans are clear, so I am in stage 2, not stage 3 - a key survival and cure rate difference. The port is probably one of the best things invented - so the process is easy and painless.
The down side is side effects. I think I had things fairly well planned - no kids was a key idea - no way could I have been a mom yesterday, still not so much today, but maybe later [thanks grandma!]. Anyone who knows me at all, knows that not being able to function as a mom even if for a day is worse than the incapacitating nausia I felt last night...damned pride. I'm not sure what it was like for Chris to come home and do the right things and say the right things and still just have to sit back and watch - good thing the meds knocked me out a bit. From what I know, and from what is starting to happen, is I should start pulling out of the funk, and then other side effects kick in, like fatigue and funky blood counts etc., then I feel better, and then we go again on 12/29.
So for all you waiting in the wings, I get the feeling meals will be a good call, for my kids and Chris moreso than me, b/c I don't feel like eating nonetheless cooking, it will be nice on bad days not to worry about that. Thanks for all the cheerleading too, this hungover bitch needed that today! So I made it through day one, needless to say I'll be having a conversaiton with my oncologist about his "we hope you'll have no nausia" schtick b/c THAT surely is not how it worked out! For his sake hopefully I'll be feeling better by then!
Monday, December 8, 2008 11:18 AM, EST
Accomplishment for the day - I am at work. Goal for tomorrow - bring my brain to work and leave the heartburn at home. We'll just have to see how that goes. I am glad for the distraction of coming to work, and not sitting pitiful at home, and the boys needed to keep moving too. The countdown to "Mrs. Clean" has begun [my head, not my house] so thanks to those who have already supplied some baldy coverage, and I need to get a good short haircut this week. Even Chris has been poking the web for some eye catching hats. I don't have a very chipper response when people ask "so how did it go?" - I can pretty much say chemo sucks, but today is better than yesterday, and once I figure out how to eat, that will be a step in the right direction. I am very thankful for the well wishes and offers to help, I'll definately be taking advantage of that esp. as I figure out this cycle, so I can better prepare for round 2. For now, if anyone out there has a few extra brain cells they can spare, let's see if we can transfuse them this way, b/c I am definately a few short today!
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