After much finagling and much angsting on my part, I have devised a schedule that has been approved by the oncologist!
Start Date: January 20th (Mom will come up for this)
Appt 2: February 3rd (Angeliki and maybe Rebecca? Beth and Anya will be coming by on the 4th)
EDIT! Appt 3:February 22th (Tracie will be here)
Appt 4:March 8th (Liddy will be here)
Start times are between 9 and 9:30am. Guess I'm not working those days.
I will double-check when I talk to them again about when Round 2 will start. But if it continues on the 'Every 2 Weeks' schedule, then it will be:
Appt 1:March 22 (Mom will be back for that)
Appt 2:April 5 (Barbara and Dad?)
Appt 3:April 19 (DeeDee)
FINAL APPT:May 3 (Marshall?)
So, I'm waiting to hear back from the rest of my family for claiming 'Come sit with me while I get pumped full of toxin' sessions before I open it to any and all takers :).
Wednesday, January 6, 2010
Maybe I've got this skewed vision of people...
...but apparently I'm really surprised at how people have been reacting when I tell them. I've had fears that I will be dismissed from shows or shown a great deal of pity...and everyone has been wonderful!
I will not allow myself go get too fatigued or nauseous to do what I love.
I will do what I must in order to feed my mental and thusly physical health.
I will start exercising as it is supposed to help reduce any side effects.
If I end up living off of saltines and ginger ale for the next month so that I can still do what I want to do, so be it.
Hear that, Chemo? You're not going to kick my ass!
I will not allow myself go get too fatigued or nauseous to do what I love.
I will do what I must in order to feed my mental and thusly physical health.
I will start exercising as it is supposed to help reduce any side effects.
If I end up living off of saltines and ginger ale for the next month so that I can still do what I want to do, so be it.
Hear that, Chemo? You're not going to kick my ass!
Tuesday, January 5, 2010
Need help finding an 18th Century/Colonial wig!
So, these were the few I found online that I liked:
Any thoughts?
Any thoughts?
Really, Dr. Dentist? REALLY??
I call you and say 'Hey...I'm starting chemotherapy soon and I need this done...how quickly can we do it' and you say 'Well, you can only come in on Saturday at noon...otherwise I can't get it all fast enough'. Does it really take a week to rush a crown? Really??? I absolutely cannot move my schedule around on Saturday...and why couldn't you call the 8am appointment and say 'Hey, I'm really sorry, but there's an emergency situation...can you come in at noon that day or can we reschedule'?
Thanks for nothing.
Thanks for nothing.
And to top it all off, my ankle hurts!
So, yesterday I went for my Second Opinion at Dana Farber.
First of all, I was reminded how much I HATE walking in bitterly cold wind and how under-prepared I was for it. I need a hat that covers my ears! I think I shall be adding some sort of ear-covering hood to my knitting queue.
Secondly, Holy Sitting Around and Waiting, Batman! I got there at 10:40, was thrown some papers, then went to a couple of different offices where they checked my ID and such before having me wait some more. I then went to get some vitals taken...BP was fine, height had not changed, and weight was 118.6 -- sounded about right! I then waited some more, finally finished filling out the paperwork, and was brought in to talk to some coordinator for support groups and such. I liked that they had specialized groups for Young Women with Breast Cancer because I had been having a hard time finding that through Mt. Auburn -- DF sees many more people, so I guess I'm not surprised that they'd have a bigger group. I was then led into an examination room and left to wait again.
Ok, so don't get me wrong, the doctor was very nice and gentle and explained everything really well. Her thoughts on the treatment weren't really any different from the oncologist's at Mt. Auburn -- the only difference was that she said it 'could be done every 3 weeks instead of every 2' and that I didn't need to 'start within 6 weeks of the surgery date but could start within 12 and it would be ok'. Other than that, it was the same. There was one clinical trial that could have worked, but she said that since my prognosis was 'really very good' that the clinical trial really wasn't necessary since it was geared to people who had more aggressive issues than mine.
The issue I had, besides the waiting, was that I felt like I was just a number. They see SO many people and the waiting room was SO crowded...and at Mt. Auburn, people recognize me, they know my name, they know my concerns and they spend a lot of time with me explaining things or answering my questions. I really do like that. I don't want to be 'just another person'.
So, because I was left waiting so long, I barely had enough time to grab lunch before going to my second appointment, this time with the Radiation Oncologist back at Mt. Auburn. First of all, they were so friendly! The head R.N. who took down my history and such was great -- she was thorough and friendly and truly seemed concerned and interested in getting everything. Then the Rad. Oncologist came in and she reminded me of Holly! She had so much energy and was so upbeat! She suggested having the radiation first (and I get tattoos! Granted, they're tiny and look like faded freckles...no big, fancy things, I suppose) and then doing the chemotherapy since I had the opera so soon. We went to talk with the Med. Oncologist who really didn't advocate the idea. Drats.
So, as I went to get my oil changed (and transmission fluid and power steering fluid) in my car, I played with my calendar. I still need to talk to the oncologist to see if this is possible, but if I'm thinking about starting on Wednesday, Jan 20th, hopefully around noonish. I do have rehearsal that night, but I'm told that I should feel fine that evening -- if I'm going to have any side effects, it'll be the next couple of days afterwards. However, I don't have huge commitments on the Thursday and Friday afterwards so I can recover, if needed, then before the next rehearsal on Saturday.
The next treatment would then be Wednesday, February 3rd. The one after that, however, would switch, if they will let me, to Monday, February 15th which is between performances and would give me Tuesday and Wednesday to rest up before Thursday's performance. The final for this first round would be Monday, March 1st, giving me plenty of time to rest up for my Birthday on the 6th before the next round begins.
I am told that the first round of Adriamycin and Cytoxin are the worse of the two rounds, but I'm going to insist that my body can handle it well. I refuse to let it do anything less. Also, as T noted when we talked on the phone, my 'taking it easy' is pretty much most people's 'normal' as I'm always on the go! It's true :). The second round (Taxol and Herceptin) usually has (possibly) only some body aches (flu-like symptoms) for a day and maybe some temporary neuropathy in my fingers and toes (tingling). I can deal with that. Sadly, however, it will get rid of the rest of my body hair. I guess I won't mind not having to wax or shave for a little while, but I do like my eyelashes and eyebrows :(.
So. Now I'm waiting to talk to the Oncologist to see if this will all work. Then I will call the salon and make an appointment to get my hair chopped off. I will also call the dentist and see if they can expedite a root canal/crown before the 20th. I will then see about ordering the wig. I decided that I wanted a longer one since I will have at least a year of short hair. I also need to get started on knitting some of those hats -- I've been working on my mom's mittens, but it's kind of slow going. I may be able to put some real time into them later this week/this weekend as I don't think I'll have much downtime at rehearsal.
I will also be telling the director tonight. I have a really big fear that he'll replace me, but I'm hoping that he'll be as awesome as the Scarlet Pimpernel director was about it (you know who you are! It was such a relief!!!). I want to warn him that yes, at some point in the near future, I will have very short hair and that I will get a wig if it is necessary (I found some nice-looking period ones on Ebay and can make a trip to Dorothy's if needed).
There may be a plan in place. I'm not looking forward to it, but at least there will be a schedule.
On another note, I don't think Maggie is doing too well. She's started some weird, very infrequent wheezing which is much like when she is going to cough up a hairball. It could be just that (she seems otherwise fine) as I've let her groom herself a little more than I had in a long time, or it could be one of the warning signs I've been told to watch for. Poor baby :(. I hope it's the former.
First of all, I was reminded how much I HATE walking in bitterly cold wind and how under-prepared I was for it. I need a hat that covers my ears! I think I shall be adding some sort of ear-covering hood to my knitting queue.
Secondly, Holy Sitting Around and Waiting, Batman! I got there at 10:40, was thrown some papers, then went to a couple of different offices where they checked my ID and such before having me wait some more. I then went to get some vitals taken...BP was fine, height had not changed, and weight was 118.6 -- sounded about right! I then waited some more, finally finished filling out the paperwork, and was brought in to talk to some coordinator for support groups and such. I liked that they had specialized groups for Young Women with Breast Cancer because I had been having a hard time finding that through Mt. Auburn -- DF sees many more people, so I guess I'm not surprised that they'd have a bigger group. I was then led into an examination room and left to wait again.
Ok, so don't get me wrong, the doctor was very nice and gentle and explained everything really well. Her thoughts on the treatment weren't really any different from the oncologist's at Mt. Auburn -- the only difference was that she said it 'could be done every 3 weeks instead of every 2' and that I didn't need to 'start within 6 weeks of the surgery date but could start within 12 and it would be ok'. Other than that, it was the same. There was one clinical trial that could have worked, but she said that since my prognosis was 'really very good' that the clinical trial really wasn't necessary since it was geared to people who had more aggressive issues than mine.
The issue I had, besides the waiting, was that I felt like I was just a number. They see SO many people and the waiting room was SO crowded...and at Mt. Auburn, people recognize me, they know my name, they know my concerns and they spend a lot of time with me explaining things or answering my questions. I really do like that. I don't want to be 'just another person'.
So, because I was left waiting so long, I barely had enough time to grab lunch before going to my second appointment, this time with the Radiation Oncologist back at Mt. Auburn. First of all, they were so friendly! The head R.N. who took down my history and such was great -- she was thorough and friendly and truly seemed concerned and interested in getting everything. Then the Rad. Oncologist came in and she reminded me of Holly! She had so much energy and was so upbeat! She suggested having the radiation first (and I get tattoos! Granted, they're tiny and look like faded freckles...no big, fancy things, I suppose) and then doing the chemotherapy since I had the opera so soon. We went to talk with the Med. Oncologist who really didn't advocate the idea. Drats.
So, as I went to get my oil changed (and transmission fluid and power steering fluid) in my car, I played with my calendar. I still need to talk to the oncologist to see if this is possible, but if I'm thinking about starting on Wednesday, Jan 20th, hopefully around noonish. I do have rehearsal that night, but I'm told that I should feel fine that evening -- if I'm going to have any side effects, it'll be the next couple of days afterwards. However, I don't have huge commitments on the Thursday and Friday afterwards so I can recover, if needed, then before the next rehearsal on Saturday.
The next treatment would then be Wednesday, February 3rd. The one after that, however, would switch, if they will let me, to Monday, February 15th which is between performances and would give me Tuesday and Wednesday to rest up before Thursday's performance. The final for this first round would be Monday, March 1st, giving me plenty of time to rest up for my Birthday on the 6th before the next round begins.
I am told that the first round of Adriamycin and Cytoxin are the worse of the two rounds, but I'm going to insist that my body can handle it well. I refuse to let it do anything less. Also, as T noted when we talked on the phone, my 'taking it easy' is pretty much most people's 'normal' as I'm always on the go! It's true :). The second round (Taxol and Herceptin) usually has (possibly) only some body aches (flu-like symptoms) for a day and maybe some temporary neuropathy in my fingers and toes (tingling). I can deal with that. Sadly, however, it will get rid of the rest of my body hair. I guess I won't mind not having to wax or shave for a little while, but I do like my eyelashes and eyebrows :(.
So. Now I'm waiting to talk to the Oncologist to see if this will all work. Then I will call the salon and make an appointment to get my hair chopped off. I will also call the dentist and see if they can expedite a root canal/crown before the 20th. I will then see about ordering the wig. I decided that I wanted a longer one since I will have at least a year of short hair. I also need to get started on knitting some of those hats -- I've been working on my mom's mittens, but it's kind of slow going. I may be able to put some real time into them later this week/this weekend as I don't think I'll have much downtime at rehearsal.
I will also be telling the director tonight. I have a really big fear that he'll replace me, but I'm hoping that he'll be as awesome as the Scarlet Pimpernel director was about it (you know who you are! It was such a relief!!!). I want to warn him that yes, at some point in the near future, I will have very short hair and that I will get a wig if it is necessary (I found some nice-looking period ones on Ebay and can make a trip to Dorothy's if needed).
There may be a plan in place. I'm not looking forward to it, but at least there will be a schedule.
On another note, I don't think Maggie is doing too well. She's started some weird, very infrequent wheezing which is much like when she is going to cough up a hairball. It could be just that (she seems otherwise fine) as I've let her groom herself a little more than I had in a long time, or it could be one of the warning signs I've been told to watch for. Poor baby :(. I hope it's the former.
Saturday, January 2, 2010
Just a reminder...
PLEASE don't discuss the contents of this blog with ANYONE without checking with me first!
I've had word that it was being discussed with other people -- and people are really blowing things way out of proportion.
The prognosis is good. The prognosis is VERY good. I'm pissed off that I'll have to go through this, but while there is no guarantee that it won't ever come back, the chance is very low.
So please, no one make out like I'm some helpless schmuck on a Lifetime movie. I'm not. I'm pissed...I'm going to fight...and I know that I'll be fine. They caught things as early as they possibly could and as of December 11th, there is NO TRACE of any more cancer in my body! They removed it. They're doing the treatments so it won't come back.
So please, please, PLEASE don't blow this out of proportion and PLEASE don't be shouting it from the rooftops. You all are invited onto this blog because I trust you all not to say anything to anyone. Talk with each other if you need to talk...or talk to me. I don't need it spread around...nor do I want to get other people worried.
Seriously. I don't want this turning into gossip or people getting unnecessarily worried. I don't want to have to remove anyone from the blog, but if I must, I will.
I've had word that it was being discussed with other people -- and people are really blowing things way out of proportion.
The prognosis is good. The prognosis is VERY good. I'm pissed off that I'll have to go through this, but while there is no guarantee that it won't ever come back, the chance is very low.
So please, no one make out like I'm some helpless schmuck on a Lifetime movie. I'm not. I'm pissed...I'm going to fight...and I know that I'll be fine. They caught things as early as they possibly could and as of December 11th, there is NO TRACE of any more cancer in my body! They removed it. They're doing the treatments so it won't come back.
So please, please, PLEASE don't blow this out of proportion and PLEASE don't be shouting it from the rooftops. You all are invited onto this blog because I trust you all not to say anything to anyone. Talk with each other if you need to talk...or talk to me. I don't need it spread around...nor do I want to get other people worried.
Seriously. I don't want this turning into gossip or people getting unnecessarily worried. I don't want to have to remove anyone from the blog, but if I must, I will.
Friday, January 1, 2010
For those of you who don't know about 'Duffy'.
Apparently when I was really little, I used to call myself 'Duffy' as I guess I couldn't say 'Stephie'. My mom always hoped that the nickname would stick, but it never did.
As I calm down a bit and let things settle, I realize that the greatest fears I have, aside from the vanity aspect, is the fatigue/nausea that wouldn't allow me to do what I want. Now, on the positive, I usually don't get fatigued normally and I'm sure that my schedule can be worked so that I can have the energy I need for what I choose to do. I also don't get nauseous. Heck, I ride loop-de-loop rollercoasters and don't get nauseous (although I think I came close on the Manta at Sea World. I think that was mostly because of the pressure of the harnesses though and going head-first through that thing). I read in the car, I knit in the car, I love twirly rides...so again, maybe it'll be ok.
It all comes down to everything not letting me live my life. I know that the doctors are giving me 'worst case scenarios' and that it doesn't apply to everyone.
Also...gaah, each treatment is going to take about 4 hours to administer? Holy boredom, Batman! I guess they're prepared for people to watch movies and stuff there...I do still have my 'Robin of Sherwood' series to get through as well as the entire 'Monty Python's Flying Circus'. Since I'm going to have a port, my hands should be free for knitting. I'll also have music to learn.
The 'eating well' part may be a little hard, as will the exercising part, but it's just something I'm going to have to do.
Ok...holy crap, the Village Cafe in Richmond, VA is being featured on 'Drive-ins, Diners, and Dives'. I wonder if I've been there? My mom and I did go to Kelly's Diner here in Somerville that was also featured on the show, but we were unimpressed. Sound Bytes was much better!
As far as wigs are concerned, I think I'm going to want to go longer rather than shorter. I will have maybe 7 months without much hair...and then much longer for the hair to grow back from being short. If possible, I think I want longer than shoulder length since if it's that when it's straight, it'll be much shorter when I curl it. I'll have plenty of time to get used to short hair again and if it's like last time, I'll want the length back again.
As I calm down a bit and let things settle, I realize that the greatest fears I have, aside from the vanity aspect, is the fatigue/nausea that wouldn't allow me to do what I want. Now, on the positive, I usually don't get fatigued normally and I'm sure that my schedule can be worked so that I can have the energy I need for what I choose to do. I also don't get nauseous. Heck, I ride loop-de-loop rollercoasters and don't get nauseous (although I think I came close on the Manta at Sea World. I think that was mostly because of the pressure of the harnesses though and going head-first through that thing). I read in the car, I knit in the car, I love twirly rides...so again, maybe it'll be ok.
It all comes down to everything not letting me live my life. I know that the doctors are giving me 'worst case scenarios' and that it doesn't apply to everyone.
Also...gaah, each treatment is going to take about 4 hours to administer? Holy boredom, Batman! I guess they're prepared for people to watch movies and stuff there...I do still have my 'Robin of Sherwood' series to get through as well as the entire 'Monty Python's Flying Circus'. Since I'm going to have a port, my hands should be free for knitting. I'll also have music to learn.
The 'eating well' part may be a little hard, as will the exercising part, but it's just something I'm going to have to do.
Ok...holy crap, the Village Cafe in Richmond, VA is being featured on 'Drive-ins, Diners, and Dives'. I wonder if I've been there? My mom and I did go to Kelly's Diner here in Somerville that was also featured on the show, but we were unimpressed. Sound Bytes was much better!
As far as wigs are concerned, I think I'm going to want to go longer rather than shorter. I will have maybe 7 months without much hair...and then much longer for the hair to grow back from being short. If possible, I think I want longer than shoulder length since if it's that when it's straight, it'll be much shorter when I curl it. I'll have plenty of time to get used to short hair again and if it's like last time, I'll want the length back again.
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