I just got back from my appointment with my surgeon. There is evidence of lymphovascular involvement, which means while there is no more evidence of cancer cells in my breast flesh there is evidence of cells in the lymph system (or how it got from the tumor to the nodes). The involvement is in both the area above and below the part that was removed and my surgeon (and basically I think the oncologist and radiation oncologist) feels the next step is a mastectomy. I kind of thought this might be the outcome after yesterday's appointments with the oncologist who had seen the pathology report and didn't want to be too positive and after receiving a message from the radiation oncologist (the person who would do radiation) saying she thought we may have to change the scheduling of my measurement appointment. I'm coming to terms with it and, after reading about the lymphvascular involvement, I guess I would be nervous to leave things intact even if they had said the next step was radiation.
My surgeon recommended some plastic surgeons and there is one she really likes. Her assistant tried getting me an appointment and they had one for Monday, which I can't make, so I'm scheduled for June 12 but they are going to try and get me in sooner.
I'm going to Cambridge tomorrow and will be gone through Tuesday. Hopefully it will be good to see people, though I might be a total bummer or be trying to do reckless things. I will try really hard not to pick up any Harvard undergrads or returning grads (reunion weekend this weekend) but can't actually make any promises. I'm guessing given the lack of drinking right now this will actually translate into large quantities of ice cream and chocolate.
A plus side of the weight gain might be the possibility of them using some of my excess flesh to rebuild. I think the plan is to do immediate reconstruction if that makes sense. This does mean I have another drain in my future.
I'm somewhat bummed and processing tonight but in the end willing to do what needs to be done. It is however, a waste of some lovely prior surgery as people do keep commenting on the good job my surgeon had done.
Kim
Friday, May 29, 2009
Saturday, May 23, 2009
2 hour sleep schedule
Hi, I just wanted to report in that i am doing pretty well. As BoSoxFox reported things went smoothly and more quickly than the prior surgery. Recovery seemed a little harder after surgery but i think this was due to my having less drugs in my system and being aware sooner. I did kind of miss the hard stuff but was happy the anesthesiologist was willing to use my mediport so there wasn't even an attempt at accessing my veins.
Melissa took me home and after sleeping off and on - Rob showed up bearing a box of bbq stuff from Kansas City. After making the decision to postpone authentic KC foods until tonight once Tracy and Ellen showed up we hung out for a while. Melissa went home to pack and get ready for a trip away and the rest of us hung out. I am definitely in pretty good shape - spent a few hours on the couch and we discussed the nta conference which seemed to go well and generally hung out. Thank you Tracy.
Back to surgery, I'm hopeful that we have clearer margins. I'm not in much pain. In fact the underarm incisions from 2 weeks ago are in some ways more bothersome than the recent surgery. I do seem to be on a two hour sleep schedule again but i'm hopeful that is fleeting and a consequence of sleeping off and on all of yesterday. I am a little sad that I think there is significant diminishment in size - this might be due to the bandage or fluid being drained from the last surgery but I think I am about to join the millions of other women who have different size tatas. Of course figuring out the aesthetics of this all can wait for a little while.
I am about to try and sleep some more - I hope you all have a fabulous weekend. I'm supposed to go to Tracy's tomorrow night (we are potentially moving ribs and BBQ outdoors and she has a backyard) and may try more excursions, of course I also might just maintain my constantly napping schedule.
Kim
PS Not to make Melissa feel too bad but it seems like the Mets beat Boston yesterday :)
Melissa took me home and after sleeping off and on - Rob showed up bearing a box of bbq stuff from Kansas City. After making the decision to postpone authentic KC foods until tonight once Tracy and Ellen showed up we hung out for a while. Melissa went home to pack and get ready for a trip away and the rest of us hung out. I am definitely in pretty good shape - spent a few hours on the couch and we discussed the nta conference which seemed to go well and generally hung out. Thank you Tracy.
Back to surgery, I'm hopeful that we have clearer margins. I'm not in much pain. In fact the underarm incisions from 2 weeks ago are in some ways more bothersome than the recent surgery. I do seem to be on a two hour sleep schedule again but i'm hopeful that is fleeting and a consequence of sleeping off and on all of yesterday. I am a little sad that I think there is significant diminishment in size - this might be due to the bandage or fluid being drained from the last surgery but I think I am about to join the millions of other women who have different size tatas. Of course figuring out the aesthetics of this all can wait for a little while.
I am about to try and sleep some more - I hope you all have a fabulous weekend. I'm supposed to go to Tracy's tomorrow night (we are potentially moving ribs and BBQ outdoors and she has a backyard) and may try more excursions, of course I also might just maintain my constantly napping schedule.
Kim
PS Not to make Melissa feel too bad but it seems like the Mets beat Boston yesterday :)
Friday, May 22, 2009
out of surgery, take 2
Hello Friends and Family of Kim,
This is guest blogger BoSoxFox (Melissa) again. Kim and I have just returned to her beautifully clean home (which is filled with lovely flowers from her amazing friends and colleagues). She is resting and listening to some NPR, so I thought I would post a quick update.
The second surgery went well. Dr. E reported that all went according to plan. They were able to use the same incision, minimizing the difficulty of the surgery. (The resident was very impressed by the incision.) The nurses and patient liasons in the surgery recovery area were all really great.
Kim has taken some percocet to help her with the pain. They did not resort to any of the hard-core drugs (morphine, nitrous) this time. I'm trying hard not to add to her pain by talking too much trash, even though our teams (BoSox and Mets) are meeting tonight. Please, no 1986 jokes!
Alas, the second day of the NTA conference has gone on with her participating only by text message. While I know Kim's disappointed not to be there, Dupont Circle does have significant advantages over L'Enfant Plaza. (If I can't trash talk sports, I can try for neighborhoods, as I am an honorary employee in L'E P.)
I'm sure Kim will be posting soon on her own!
Hope everyone has a great long weekend.
Melissa
This is guest blogger BoSoxFox (Melissa) again. Kim and I have just returned to her beautifully clean home (which is filled with lovely flowers from her amazing friends and colleagues). She is resting and listening to some NPR, so I thought I would post a quick update.
The second surgery went well. Dr. E reported that all went according to plan. They were able to use the same incision, minimizing the difficulty of the surgery. (The resident was very impressed by the incision.) The nurses and patient liasons in the surgery recovery area were all really great.
Kim has taken some percocet to help her with the pain. They did not resort to any of the hard-core drugs (morphine, nitrous) this time. I'm trying hard not to add to her pain by talking too much trash, even though our teams (BoSox and Mets) are meeting tonight. Please, no 1986 jokes!
Alas, the second day of the NTA conference has gone on with her participating only by text message. While I know Kim's disappointed not to be there, Dupont Circle does have significant advantages over L'Enfant Plaza. (If I can't trash talk sports, I can try for neighborhoods, as I am an honorary employee in L'E P.)
I'm sure Kim will be posting soon on her own!
Hope everyone has a great long weekend.
Melissa
Friday, May 15, 2009
Two steps forward - one step back?
Hi, I just got back from the surgeon and thought I would report on the meeting. They took the drain out :) and my stitches and incisions all look good. The pathology of my lymph nodes was good - they removed 24 and only 2 (the sentinel node and one other) tested positive for cancer. My surgeon also thought that it was highly unlikely I would need more chemo - she said that the lymph nodes aren't a gateway to the rest of the body but give a good picture of whether cancer has gone beyond the breast. I need to check in with my oncologist to confirm that no more chemo is in my near future but that seems correct. So it looks like my hair growth (just currently stubble) can continue unabated.
The main negative news was that the margins of the area removed were not large enough. They want there to be a 4mm margin around the tumor in the tissue excised and on some edges (they know which ones by dyeing each side a different color) the margin was 1mm or less. This means more surgery for me but my doctor was optimistic that doing a limited surgery would produce the margins needed to go forward.
I'm somewhat bummed that every step seems to be more complicated than under the best scenario but I'm getting used to it and am happy for forward progress. The next surgery will be easier - no lymph nodes to radiate, dye and remove and no wires to place and I should be home that afternoon. The lack of a drain and involvement of my underarm area will also help. The timing is a little unfortunate as I am having surgery next Friday, the day of a national conference I co-organized. Everything should be set but I'm sad to miss the panels we worked to set up. I hope I still get my thank you gift :).
Anyway, having surgery sooner rather than later will make it easier and keep things moving along. I'm supposed to go to Cambridge the following weekend ( for another conference) and my doctor seemed to think that would still work. She even thought I could have potentially had the surgery that Friday (5/29) and still have gone to a Monday-Tuesday conference the following week. All indications that the surgery next week should be straight forward and easy.
I do try to keep reminding myself that this will be over in a little while - things are taking longer than I would like but I am moving forward.
Kim
The main negative news was that the margins of the area removed were not large enough. They want there to be a 4mm margin around the tumor in the tissue excised and on some edges (they know which ones by dyeing each side a different color) the margin was 1mm or less. This means more surgery for me but my doctor was optimistic that doing a limited surgery would produce the margins needed to go forward.
I'm somewhat bummed that every step seems to be more complicated than under the best scenario but I'm getting used to it and am happy for forward progress. The next surgery will be easier - no lymph nodes to radiate, dye and remove and no wires to place and I should be home that afternoon. The lack of a drain and involvement of my underarm area will also help. The timing is a little unfortunate as I am having surgery next Friday, the day of a national conference I co-organized. Everything should be set but I'm sad to miss the panels we worked to set up. I hope I still get my thank you gift :).
Anyway, having surgery sooner rather than later will make it easier and keep things moving along. I'm supposed to go to Cambridge the following weekend ( for another conference) and my doctor seemed to think that would still work. She even thought I could have potentially had the surgery that Friday (5/29) and still have gone to a Monday-Tuesday conference the following week. All indications that the surgery next week should be straight forward and easy.
I do try to keep reminding myself that this will be over in a little while - things are taking longer than I would like but I am moving forward.
Kim
Thursday, May 14, 2009
checking in
Hi, just checking in - still no news as my doctor's appointment is tomorrow. I am feeling somewhat better - slept 4 hours without waking up last night - have stopped taking the percocet and even showered both yesterday and today. My drainage has declined and is pretty minimal and while my arm hurts I'm guessing much of it has to do with the awkwardness of the drain. I'm hoping i will have it removed tomorrow and begin doing some exercises. The stiches still look pretty good. I still haven't really put on outside clothes - this might make going to meetings next week interesting. I'm not sure how many shirts i have that button up.
Anyway - thanks for the flowers, delicious food and good wishes. I've been remarkably content to mainly hang out at home with various visitors or by myself.
Kim
Anyway - thanks for the flowers, delicious food and good wishes. I've been remarkably content to mainly hang out at home with various visitors or by myself.
Kim
Saturday, May 9, 2009
One-handed typing
Hi, I am out of the hospital and home and seeing how well I can function with one arm. I meant to blog earlier but have had some phone calls and visitors. I am doing okay now and am going to have chicken soup for dinner and then watch grace kelly or audrey hepburn movies. I'm not in much pain and doing pretty well - it only hurts when i move my arm too much, but I have a supply of percocet to deal with that.
Yesterday was a long day and finding out my sentinel lymph nodes were cancerous was a bummer, and I'm not sure what it means for treatment. In the short run, it means I have a drain which is a rubber grenade shaped ball (which does not contain munitions) attached to a tube in my arm from where they excised my lymph nodes that needs periodic emptying. I'm guessing it also means I will be mostly spending time at home.
The pre surgery stuff was okay, though weird to become radioactive and then have a wire sticking out of me. They also injected me with blue dye - which made for a colorful bathroom experience and I might have discovered how they make tidybowl bathroom cleaner.
I had an iv put into my right wrist rather than hand which was somewhat painful and was way too incapacitating. Nothing like waking up in recovery to have one hand not functional because of the iv and the other arm really sore.
I will write more later, but now I'm going to snack on pate and bread while the soup boils. Bottom line is I'm okay and need more information about what things mean and will try and focus on recuperating. I'm pretty up and thus far had Melissa and Elizabeth visit in the hospital and Sue, Rich and Jon stop by at home. I'm feeling pretty okay given the lack of sleep the last few nights.
Bye for now - snacking calls.
Kim
Yesterday was a long day and finding out my sentinel lymph nodes were cancerous was a bummer, and I'm not sure what it means for treatment. In the short run, it means I have a drain which is a rubber grenade shaped ball (which does not contain munitions) attached to a tube in my arm from where they excised my lymph nodes that needs periodic emptying. I'm guessing it also means I will be mostly spending time at home.
The pre surgery stuff was okay, though weird to become radioactive and then have a wire sticking out of me. They also injected me with blue dye - which made for a colorful bathroom experience and I might have discovered how they make tidybowl bathroom cleaner.
I had an iv put into my right wrist rather than hand which was somewhat painful and was way too incapacitating. Nothing like waking up in recovery to have one hand not functional because of the iv and the other arm really sore.
I will write more later, but now I'm going to snack on pate and bread while the soup boils. Bottom line is I'm okay and need more information about what things mean and will try and focus on recuperating. I'm pretty up and thus far had Melissa and Elizabeth visit in the hospital and Sue, Rich and Jon stop by at home. I'm feeling pretty okay given the lack of sleep the last few nights.
Bye for now - snacking calls.
Kim
Home!
Hi again.
Kim is now at home, feeling well, and in good spirits, and will be posting soon.
Melissa
Kim is now at home, feeling well, and in good spirits, and will be posting soon.
Melissa
Friday, May 8, 2009
Greetings from Kim
This is BoSoxFox again. I am on the phone with Kim as I type.
She is feeling OK, and she did great with surgery. (Yay, Dr. E.!)
Unfortunately, they did find cancer in the sentinel lymph nodes, so they removed more lymph nodes.
As a result, Kim is spending the night in Georgetown Hospital (phone: 202-444-0590). Talking is a little hard for her now, so she'll plan to call folks over the weekend when her throat feels better.
Melissa
She is feeling OK, and she did great with surgery. (Yay, Dr. E.!)
Unfortunately, they did find cancer in the sentinel lymph nodes, so they removed more lymph nodes.
As a result, Kim is spending the night in Georgetown Hospital (phone: 202-444-0590). Talking is a little hard for her now, so she'll plan to call folks over the weekend when her throat feels better.
Melissa
Out of surgery
Hi to all of Kim's friends and family,
This is a guest post from Kim's friend Melissa (also known as BoSoxFox).
I just spoke to Elizabeth, who has just spoken to Dr. E., Kim's surgeon.
Kim is now, thankfully, out of surgery and in recovery.
I'll post more later, after I have spoken to Kim, which I expect will be later this afternoon (hopefully by 8pm-ish, east-coast time).
Melissa
This is a guest post from Kim's friend Melissa (also known as BoSoxFox).
I just spoke to Elizabeth, who has just spoken to Dr. E., Kim's surgeon.
Kim is now, thankfully, out of surgery and in recovery.
I'll post more later, after I have spoken to Kim, which I expect will be later this afternoon (hopefully by 8pm-ish, east-coast time).
Melissa
Wednesday, May 6, 2009
Countdown to surgery
Hi, sorry I've been bad about blogging but it is because I've been out doing things and enjoying feeling pretty healthy. :) This past weekend I went to Charlottesville to visit Monticello with my friend Sue and her mom and, as an added bonus I got to see my sister and her family because it was my brother-in-law's 25th reunion from Law School. It was also his 50th birthday and I think we all had a good time. Monticello was nice and it felt good to be walking around - though I did get tired at points. The visit with family was fun and the drive down was super fun once I got on highway 29. Until that point I was in way too much traffic. All-in-all it was a fun successful weekend and I was glad to get away. I did have a slight fender-bender - pouring rain, plus stop and go traffic, but everyone is okay with only minimal bumper damage. (DO NOT SHARE this with MY MOTHER - she has enough on her mind with my surgery and my grandmother being back in the hospital.)
The trip was mostly fun - though Jefferson can make one feel inadequate with one's accomplishments. Of course having money and forced labor helped.
This week I have been at work but not making a tremendous amount of progress - I have just been inflicting my somewhat cranky self on those around me. Apparently I get cranky when nervous, though most of you probably realized that long ago. I also have gotten a number of presents - a care package from Joan, Semida and the folks at the Lincoln Institute, a doll from Taleen's mom and aunt and a book (with humorous stories about breasts) from Carol and her Australian editors. I also got a cd from Rafael with super-duper disco songs. The presents are great as are the messages and good wishes. Note this is not a demand for more loot. (Though I've never said no to chocolate and flowers.) I'm happy with the ton of things I've gotten over the duration (the upside of cancer is you get stuff) and would just love some good juju and wishes on Friday.
My friend Elizabeth is coming tomorrow to hang out during surgery and is going to take care of me afterward through the weekend. Happy mother's day to her. She has surgery bonafides having gone through her mom's two surgeries and her cousin's operation. Her aunt and cousin are hopefully going to come meet her for lunch on Friday. Then my friend Karen is scheduled for a visit Wednesday through Sunday of the following week and I just found out Julie is coming back to Maryland so will come by for a return visit on Tuesday. Julie had a work trip and came to visit the week after first chemo and also dropped off the lovely caps I've been wearing for the last 6 months. Hopefully she doesn't want them back quite yet as I don't think my see through fuzz makes for much head cover.
Its scary how all the people listed in the paragraph above have been touched by breast cancer. Jane (Elizabeth's aunt), Karen, and Julie are all survivors, as is Elizabeth's mom. Wendy was BRCA positive - Elizabeth is happily negative despite it being in her family but I'm not sure I have yet to come across someone without a family member or close friend who has gone through this.
Anyway - I am trying to stay calm and will be happy when it is over. BoSoxFox will post Friday once I'm out of surgery. Keep your fingers crossed and have a good rest of the week.
xxoo
Kim
The trip was mostly fun - though Jefferson can make one feel inadequate with one's accomplishments. Of course having money and forced labor helped.
This week I have been at work but not making a tremendous amount of progress - I have just been inflicting my somewhat cranky self on those around me. Apparently I get cranky when nervous, though most of you probably realized that long ago. I also have gotten a number of presents - a care package from Joan, Semida and the folks at the Lincoln Institute, a doll from Taleen's mom and aunt and a book (with humorous stories about breasts) from Carol and her Australian editors. I also got a cd from Rafael with super-duper disco songs. The presents are great as are the messages and good wishes. Note this is not a demand for more loot. (Though I've never said no to chocolate and flowers.) I'm happy with the ton of things I've gotten over the duration (the upside of cancer is you get stuff) and would just love some good juju and wishes on Friday.
My friend Elizabeth is coming tomorrow to hang out during surgery and is going to take care of me afterward through the weekend. Happy mother's day to her. She has surgery bonafides having gone through her mom's two surgeries and her cousin's operation. Her aunt and cousin are hopefully going to come meet her for lunch on Friday. Then my friend Karen is scheduled for a visit Wednesday through Sunday of the following week and I just found out Julie is coming back to Maryland so will come by for a return visit on Tuesday. Julie had a work trip and came to visit the week after first chemo and also dropped off the lovely caps I've been wearing for the last 6 months. Hopefully she doesn't want them back quite yet as I don't think my see through fuzz makes for much head cover.
Its scary how all the people listed in the paragraph above have been touched by breast cancer. Jane (Elizabeth's aunt), Karen, and Julie are all survivors, as is Elizabeth's mom. Wendy was BRCA positive - Elizabeth is happily negative despite it being in her family but I'm not sure I have yet to come across someone without a family member or close friend who has gone through this.
Anyway - I am trying to stay calm and will be happy when it is over. BoSoxFox will post Friday once I'm out of surgery. Keep your fingers crossed and have a good rest of the week.
xxoo
Kim
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