As I've passed the year mark of being diagnosed and as I hit the anniversary of certain events, I find myself getting kind of philosophical about this whole experience. When I look back on doctor's records and think back about where I was a year earlier I think a lot about what I've been through and dealt with this year. I want to thank you all for being so supportive and great during this year. My support system has been terrific and I am totally grateful for the support I received and feel blessed to have such caring people in my life.
Partly things were brought home yesterday. First it was my work Christmas party, which last year corresponded to the day after first chemo when I felt really bad. Later, I'd figure out that 6 days in or 2 days post steroids I felt terrible due to steroid withdrawal, but this first day I just knew I was at a Xmas party saying goodbye to someone who was retiring and starting to have the worst headache and need to get home. After it happened again after chemo 2 I'd figure out what it was, but now looking back I just realize how long this year has been and how grateful I am to be where I am right now.
I also found out that someone who was diagnosed with breast cancer during the year after I was isn't likely to have as good an outcome. R, who is the ex-nanny of a friend of mine was diagnosed with breast cancer in the Spring. She came here from a foreign country to earn money for the family she left behind and has been doing grueling work working as a nanny. While not having health insurance, her current employer and my friend found treatment for her and have been helping her through this process. While her initial prognosis seemed promising, her cancer ended up metastisizing first to her brain and then to her spine. She is having more chemo to try and get things stabilized so she can go home to see her family and those around her are being terrific.
On the surface, even without health insurance R was able to get treatment and has a support network in place. It might seem totally random who ends up with better or worse outcomes and I am acutely aware that things can go wrong for anyone but I can't help thinking that socio-economic status and the way health care works kind of stacked the deck against R and in my favor. While in the country legally and working on the books, R doesn't earn much and sends much of her money back home to her family and kids. This meant scrimping on things for herself which included health insurance. This probably meant not getting diagnosed right away and her lack of health insurance probably meant that it took longer to figure out how to get her treatment and to figure out logistics which I'm guessing added to the probability of this worse outcome.
I realize that one can't make generalizations from specific cases and an n of 2 isn't robust but our contrasting outcomes just seems to bring home to me what the statistics show. Breast cancer, while found across all groups and income levels and a pain for anyone to deal with tends to be more deadly for poor women and women of color. And this for me makes the case for health care reform to pass, despite all the politics and crap going on right now in Congress. Basically doing something to try and close health gaps seems clear.
There are many reasons why different groups have different outcomes but our situation just seems so stark. I'm hoping R is able to get home and see her family and I am sad that her situation seems so bleak. I'm hoping we make some progress to getting others insurance.
Thanks again for all your support and I'm trying to send positive thoughts to R and her family and hope you are all well and have a happy and healthy year.
Friday, December 18, 2009
Saturday, November 21, 2009
Mammograms and other musings
While I should be working on slides for an upcoming presentation, I've been getting a lot of questions about how I feel about the new mammogram recommendations. I have to admit to being somewhat ambivalent. As someone who had gotten annual mammograms since 30 and yet they managed to miss my slow-growing tumor--even when it was explicitly pointed out to the radiologist--I have some sympathy for the people behind the study. I think having a fairly useless test isn't a good use of healthcare dollars.
Mammograms are a notoriously bad technology for finding tumors in younger women. Maybe this should be the main takeaway point. Most things that look dark or light are not tumors, and masses can be missed. If this leads to more nuanced discussions, that could be good and maybe skipping some mammograms isn't such a big deal. Of course, I would like them to replace them with alternate technology. Ideally, letting women for whom they find the technology doesn't work well have mri earliers could be a good thing. My take away is that we rely on tests that may or may not save lives. Thinking about the prevalence and effectiveness of these tests is a good thing to do. Partly, I feel a little bad about my prosletizing to friends who postponed getting mammograms in the past.
Of course, I had this conversation with a friend who found a small tumor, and she is beating herself up a little bit about the fact that she skipped a year and the tumor is bigger than it might have been. It's not clear that they would have found it anyway. Getting back to me (after all, it's all about me), this seems possible given that they managed to miss mine for a number of years.
Not sure whether some of the little tumors would disappear or not metastasize, but I do find the evidence compelling that some small tumors that have been found probably wouldn't have grown into malignant tumors. We'll see how it all pans out, and it seems from the backlash that the report might not change recommendations.
So I'm less exercised than others about the rulings and find it slightly self-serving that radiologists seem to be the folks most adamant about the new recommendations being bad. (Nothing to do with the money they will lose.) I hope people will take the tests not to be magic bullets, be in touch with their own body (both literally and figuratively), and be their own advocates if they think something is wrong and figure out what the right response to their situation should be.
I keep coming back to the fact that I had a lump I was nervous about and let it go for 6 months after getting a mammogram the first time around, and did not insist on having a biopsy. As with all things, I'm trying to let go of the regrets for indecisions past. But I was pretty sure something was off but was happy to live in a state of denial for a little while which in the end has lengthened this whole process.
In other news, last week's illness ended up not being H1N1. I found out on Friday at 3pm that it wasn't flu and maybe didn't need to be under quarantine. However, it certainly must have been some virus as the tamiflu was a miracle drug. My brother's surgery also went well. He seems to be on the mend and sees better out of the eye already.
I spent Wednesday having some other standard doctor's appointments (I needed pre-surgery cardio-clearance). My heart seems fine, though I need an echo, and I had my gyno exam. On the plus side, the new cervical cancer rules make me feel less bad that I went about 2years without a pap smear. Somehow, earlier this year I couldn't add other routine appointments back into my life, as I had hit my doctors' appointment wall. The upside of going to a women's health center was that I was able to get the H1N1 dead vaccine (the flu shot not nasal spray) because the women's center had it in stock for pregnant women and they were willing to give it to me. Apparently, being high risk all on my own was enough to qualify and to report back to the health deparment.
So I am hopeful I will be swine flu free as I recover from surgery. (Yes, my nightmare scenario was coughing and sneezing after abdominal surgery.) Now I need to stop focusing on my health and go back to the craziness which is the states' fiscal health. CA has a $20 billion gap developing already.
Oh joy. Hope you all have a Happy Thanksgiving and stay healthy even with the hordes of travelling folks.
Mammograms are a notoriously bad technology for finding tumors in younger women. Maybe this should be the main takeaway point. Most things that look dark or light are not tumors, and masses can be missed. If this leads to more nuanced discussions, that could be good and maybe skipping some mammograms isn't such a big deal. Of course, I would like them to replace them with alternate technology. Ideally, letting women for whom they find the technology doesn't work well have mri earliers could be a good thing. My take away is that we rely on tests that may or may not save lives. Thinking about the prevalence and effectiveness of these tests is a good thing to do. Partly, I feel a little bad about my prosletizing to friends who postponed getting mammograms in the past.
Of course, I had this conversation with a friend who found a small tumor, and she is beating herself up a little bit about the fact that she skipped a year and the tumor is bigger than it might have been. It's not clear that they would have found it anyway. Getting back to me (after all, it's all about me), this seems possible given that they managed to miss mine for a number of years.
Not sure whether some of the little tumors would disappear or not metastasize, but I do find the evidence compelling that some small tumors that have been found probably wouldn't have grown into malignant tumors. We'll see how it all pans out, and it seems from the backlash that the report might not change recommendations.
So I'm less exercised than others about the rulings and find it slightly self-serving that radiologists seem to be the folks most adamant about the new recommendations being bad. (Nothing to do with the money they will lose.) I hope people will take the tests not to be magic bullets, be in touch with their own body (both literally and figuratively), and be their own advocates if they think something is wrong and figure out what the right response to their situation should be.
I keep coming back to the fact that I had a lump I was nervous about and let it go for 6 months after getting a mammogram the first time around, and did not insist on having a biopsy. As with all things, I'm trying to let go of the regrets for indecisions past. But I was pretty sure something was off but was happy to live in a state of denial for a little while which in the end has lengthened this whole process.
In other news, last week's illness ended up not being H1N1. I found out on Friday at 3pm that it wasn't flu and maybe didn't need to be under quarantine. However, it certainly must have been some virus as the tamiflu was a miracle drug. My brother's surgery also went well. He seems to be on the mend and sees better out of the eye already.
I spent Wednesday having some other standard doctor's appointments (I needed pre-surgery cardio-clearance). My heart seems fine, though I need an echo, and I had my gyno exam. On the plus side, the new cervical cancer rules make me feel less bad that I went about 2years without a pap smear. Somehow, earlier this year I couldn't add other routine appointments back into my life, as I had hit my doctors' appointment wall. The upside of going to a women's health center was that I was able to get the H1N1 dead vaccine (the flu shot not nasal spray) because the women's center had it in stock for pregnant women and they were willing to give it to me. Apparently, being high risk all on my own was enough to qualify and to report back to the health deparment.
So I am hopeful I will be swine flu free as I recover from surgery. (Yes, my nightmare scenario was coughing and sneezing after abdominal surgery.) Now I need to stop focusing on my health and go back to the craziness which is the states' fiscal health. CA has a $20 billion gap developing already.
Oh joy. Hope you all have a Happy Thanksgiving and stay healthy even with the hordes of travelling folks.
Monday, November 9, 2009
So much for staying busy
Pretty sure what I have isn't a cold. Somehow the constant fever and the fact that I am cold for the first time in months means I probably have some sort of flu. I have a doctor's appointment tomorrow, have begun canceling travel plans (no Seattle, pretty sure no Denver) but hopefully it will run its course and then I can go on about my business.
Apparently dancing around a bar is hazardous to my health. One of my partners in crime (CrazeeforSushi) is also sick - and yes did request the nickname though I decided on the gangsta spelling for Crazee. Hopefully other folks in my vicinity won't get sick but on the positive side if it is H1N1 getting it and recovering would be a very good thing before surgery in January.
Apparently dancing around a bar is hazardous to my health. One of my partners in crime (CrazeeforSushi) is also sick - and yes did request the nickname though I decided on the gangsta spelling for Crazee. Hopefully other folks in my vicinity won't get sick but on the positive side if it is H1N1 getting it and recovering would be a very good thing before surgery in January.
Sunday, November 8, 2009
Staying busy
I've managed to totally overbook November into December in part I think to take my mind off of the upcoming surgery. I was on a roundtable last Friday, flew to MA for overnight, and was on two sessions at the APPAM conference. On the plus side I got to see a ton of people I like and have fun with and heard some interesting presentations. On the down side, seeing thousands of folks, seems to have led to me catching a cold and I'm about to get on a plane to seattle tomorrow evening and need to get slides done for a presentation on Thursday. I probably should try and sleep and see if I can get rid of the cold but who knows what I'll end up doing the rest of today. I'm pretty sure it isn't flu - I don't really feel bad enough but it would be good for my brain to function at Tuesday's meeting. I go from DC to Seattle and then Seattle to Denver and then back to DC on Saturday. I"m then in DC for a week before going to Las Vegas for Thanksgiving, NY for the Monday after Thanksgiving and then back to Seattle mid-December and I will probably try and spend the weekend in the Bay area to make flying cross country so much not seem so bad.
I then stay put with surgery on January 7. I have assorted doctor's appointments and other things to do but I'm guessing this will all get done.
In other news, I went to the Lazy-Boy store yesterday and was unable to find a recliner to meet what i want - somehow over the last 20 years they are super plush and go back too far and don't seem to be able to go back and forth without using my stomach muscles.
There was the automatic lift chair but it doesn't come in black. Can someone explain to me why getting a black recliner seems to be difficult? There are tons of them in nail salons throughout the country.
So I'm thinking I will look at other places, or rent one - there's also the potential of buying one from a medical supply store.
Otherwise things are good - seeing people this week was really fun, even if I did end up drinking probably too much and maybe I'm too old to be dancing around bars. It was a super fun Friday night and I had the added advantage of being asked for id twice. I'm not sure there's anyway I look under 21 but apparently they have to ask if they think you are under 35 - a bonus in any case.
Anyway - Hopefully I can get the cold under control before the travels begin - I'd hate to be the one to get 100s of folks sick at the National Tax meeting in Denver.
I then stay put with surgery on January 7. I have assorted doctor's appointments and other things to do but I'm guessing this will all get done.
In other news, I went to the Lazy-Boy store yesterday and was unable to find a recliner to meet what i want - somehow over the last 20 years they are super plush and go back too far and don't seem to be able to go back and forth without using my stomach muscles.
There was the automatic lift chair but it doesn't come in black. Can someone explain to me why getting a black recliner seems to be difficult? There are tons of them in nail salons throughout the country.
So I'm thinking I will look at other places, or rent one - there's also the potential of buying one from a medical supply store.
Otherwise things are good - seeing people this week was really fun, even if I did end up drinking probably too much and maybe I'm too old to be dancing around bars. It was a super fun Friday night and I had the added advantage of being asked for id twice. I'm not sure there's anyway I look under 21 but apparently they have to ask if they think you are under 35 - a bonus in any case.
Anyway - Hopefully I can get the cold under control before the travels begin - I'd hate to be the one to get 100s of folks sick at the National Tax meeting in Denver.
Friday, October 23, 2009
One sick family
In the past when people would talk about my family being sick, it had to do with the fact that we tend to be loud, a little raucous and often inappropriate. With the e-mail description of my brother's imminent corneal transplant (for a degenerative rarely rare eye-disease wholly unrelated to the one I had) and my cousin's car accident and the need for pins in his legs - we seem to be using the health care system way too much this year. Even my very healthy 20-something year old cousin decided having one baby wasn't enough and she had to up the ante by having twins. It's been quite the year, and I'm probably missing some things but I just want to make a couple of observations.
1) I know you guys are competitive and all, but I kind of think in the contest to generate the most in health care bills - I'm pretty sure I won this year so you may as well just stop trying and stay healthy. Grandma might have me beat, but she's 90 and I'm not sure she should count.
I kind of want to lay claim to next year too, what with the fat transplant surgery and rebuilding process, so again you might as well all just stay healthy. This means no complications in healing, please, and no more entrants into this event for 2010.
2) This might all be a strong argument for genetic diversity and might make the fact that most of you married and procreated with folks from different backgrounds a really good thing. (Not sure what this means for you Abby - I'm hoping the Russian part is enough to make Roman's DNA more varied.) Yes, we are smart and funny. The allergies are one thing, but 2 weird eye diseases - that just seems crazy. We won't even get into the cancer, high blood pressure etc...
3) In the end, I'm glad the year is coming to the end, grateful we all have good medical care, and look forward to seeing you all. I just found out some devestating news about recurrence in a family member of a friend, so even with all the bumps and bruises - I'm actually very grateful it all seems more of an inconvenience than anything too devastating.
For those of you not related to me - I'd also appreciate it if you could also stay healthy.
1) I know you guys are competitive and all, but I kind of think in the contest to generate the most in health care bills - I'm pretty sure I won this year so you may as well just stop trying and stay healthy. Grandma might have me beat, but she's 90 and I'm not sure she should count.
I kind of want to lay claim to next year too, what with the fat transplant surgery and rebuilding process, so again you might as well all just stay healthy. This means no complications in healing, please, and no more entrants into this event for 2010.
2) This might all be a strong argument for genetic diversity and might make the fact that most of you married and procreated with folks from different backgrounds a really good thing. (Not sure what this means for you Abby - I'm hoping the Russian part is enough to make Roman's DNA more varied.) Yes, we are smart and funny. The allergies are one thing, but 2 weird eye diseases - that just seems crazy. We won't even get into the cancer, high blood pressure etc...
3) In the end, I'm glad the year is coming to the end, grateful we all have good medical care, and look forward to seeing you all. I just found out some devestating news about recurrence in a family member of a friend, so even with all the bumps and bruises - I'm actually very grateful it all seems more of an inconvenience than anything too devastating.
For those of you not related to me - I'd also appreciate it if you could also stay healthy.
Friday, October 16, 2009
The year of gratuitous beautification has begun
So I was going to change the title of the blog as the first year (and what will be referred to as the cancer year) is just about over and I need to figure out when the year of beautification shall begin. I'm thinking it might have started last Sunday, as while some were walking to find a cure for breast cancer (3 day DC breast cancer walk) and others were marching for marriage equality, I was holed up in the Red Door Spa at the Willard Hotel having a facial, massage, manicure and pedicure. It was lovely and neccessary given the tightness in my back. (Thank you Tal.)
I had fun seeing the other folks in town, including my friends Andres and Lisa who were visiting. And it seems like the march was successful and those that participated seemed to really enjoy it.
I saw the physical therapist on Wednesday, who confirmed that my back is a tight mess. Is it nutty that we ended the session with her asking me 1) when was my next massage was scheduled and 2) suggesting I should check with my doctor but maybe i needed to see a chiropractor for realignment?
Today I saw my plastic surgeon and breast surgeon. Besides needing to wait to see both of them due to them being stuck down in the OR (something I'm happy to be delayed for - you want surgeons to take their time when operating on others as well as me). I seem to be healing well and to not totally bury the lead - I'll be having the DIEP surgery on January 7. The DIEP surgery involves harvesting fat, skin and tissue and an artery and vein from my belly area and transplanting it and shaping it into a breast. The timing will be a little under 4 months from the end of radiation and my doc feels the timing is fine.
I am allowed to do whatever I want exercise wise in the mean time but need to understand that the size of breast will depend on what transfer tissues he has to work with. I'm guessing I'll try to stretch and swim, maybe lift some weights, do some other aerobic activities and maybe even do some sit-ups to try and get back some muscle tone and then if need be I can always up my intake of chocolate and pate (and other fat inducing foods). It will make for an interesting holiday season in any case. After surgery I will be in the hospital for 4-5 days and then at home for about a month (they say longer but I'm guessing I might be able to be out and recovered by my birthday).
Otherwise - things look good - my expander was expanded and he does seem amenable to my getting an implant if i would rather go that route. I think I'm committed to the flap surgery as it seems that the tissue transfer will help the other tissue heal. The skin/tissue seems to be healing well after radiation and things should be settled down by December. I also got more valium (needed to relax the muscle for the expansion) but I'm also hoping it might make my back feel better.
I saw Dr. E afterward and besides her being very pregnant (due in 3 weeks) that appointment went well and was pretty uneventful. There is (knock wood) no evidence of any tumors or anything hinky in my other breast and I have pretty good range of motion in my left arm and i will see her again in March. Both sets of folks asked about the mediport and if I wanted it out. I said I'd prefer to keep it until after at least the first reconstruction surgery and everyone seemed fine with that. If I'm in the hospital for a few days I'd much rather have the port than to have them playing with getting iv's into veins.
Other news - i get to add a cardiologist to my collection of pre-op visits. Apparently protocol changed over the last few weeks and if you have had adriamyacin in the past you need to be checked out and approved by a cardiologist before they can give you anesthesia. I guess it's better safe than sorry - though it seems a little silly in that they've already ran an ekg and an echocardiogram since I stopped with the chemo and I've had 3 surgeries since then with anesthesia.
So things look good - I'm happy to have the doctors sign off and to have a date set for reconstruction. Next up I think is to buy a recliner - possibly one with a massage feature built in. It isn't neccessary for recovery but i think it will be good to have.
Now the goal is to get stuff done before the new year - of course, this does make setting New Year's Resolutions easier.
I had fun seeing the other folks in town, including my friends Andres and Lisa who were visiting. And it seems like the march was successful and those that participated seemed to really enjoy it.
I saw the physical therapist on Wednesday, who confirmed that my back is a tight mess. Is it nutty that we ended the session with her asking me 1) when was my next massage was scheduled and 2) suggesting I should check with my doctor but maybe i needed to see a chiropractor for realignment?
Today I saw my plastic surgeon and breast surgeon. Besides needing to wait to see both of them due to them being stuck down in the OR (something I'm happy to be delayed for - you want surgeons to take their time when operating on others as well as me). I seem to be healing well and to not totally bury the lead - I'll be having the DIEP surgery on January 7. The DIEP surgery involves harvesting fat, skin and tissue and an artery and vein from my belly area and transplanting it and shaping it into a breast. The timing will be a little under 4 months from the end of radiation and my doc feels the timing is fine.
I am allowed to do whatever I want exercise wise in the mean time but need to understand that the size of breast will depend on what transfer tissues he has to work with. I'm guessing I'll try to stretch and swim, maybe lift some weights, do some other aerobic activities and maybe even do some sit-ups to try and get back some muscle tone and then if need be I can always up my intake of chocolate and pate (and other fat inducing foods). It will make for an interesting holiday season in any case. After surgery I will be in the hospital for 4-5 days and then at home for about a month (they say longer but I'm guessing I might be able to be out and recovered by my birthday).
Otherwise - things look good - my expander was expanded and he does seem amenable to my getting an implant if i would rather go that route. I think I'm committed to the flap surgery as it seems that the tissue transfer will help the other tissue heal. The skin/tissue seems to be healing well after radiation and things should be settled down by December. I also got more valium (needed to relax the muscle for the expansion) but I'm also hoping it might make my back feel better.
I saw Dr. E afterward and besides her being very pregnant (due in 3 weeks) that appointment went well and was pretty uneventful. There is (knock wood) no evidence of any tumors or anything hinky in my other breast and I have pretty good range of motion in my left arm and i will see her again in March. Both sets of folks asked about the mediport and if I wanted it out. I said I'd prefer to keep it until after at least the first reconstruction surgery and everyone seemed fine with that. If I'm in the hospital for a few days I'd much rather have the port than to have them playing with getting iv's into veins.
Other news - i get to add a cardiologist to my collection of pre-op visits. Apparently protocol changed over the last few weeks and if you have had adriamyacin in the past you need to be checked out and approved by a cardiologist before they can give you anesthesia. I guess it's better safe than sorry - though it seems a little silly in that they've already ran an ekg and an echocardiogram since I stopped with the chemo and I've had 3 surgeries since then with anesthesia.
So things look good - I'm happy to have the doctors sign off and to have a date set for reconstruction. Next up I think is to buy a recliner - possibly one with a massage feature built in. It isn't neccessary for recovery but i think it will be good to have.
Now the goal is to get stuff done before the new year - of course, this does make setting New Year's Resolutions easier.
Wednesday, October 7, 2009
Back in DC
Just back from Myrtle Beach and though I had a great time in both Europe and at the beach, I'm happy to be staying put for a little while. It helps when making vacation plans to figure out both when you go and come back from trips. Last Sunday (10 days ago) after landing from Paris the night before and deciding that I wasn't in fact going to services for Yom Kippur, I realized I was leaving for Myrtle Beach in less than a week.
Visiting with Tal & Paul was fun, if not filled with sun-drenched days. It rained on Monday and was cloudy Tuesday but the hanging out and relaxing time was terrific. We sat around, they cooked and we did go see a local garden that had a lovely collection of sculpture, beautiful flowers, butterflies and some of the most amazing Oak trees you could imagine. They also have a zoo and some animals, that we didn't get to see too much of. Lots of good food, some sun time and shopping - I'm not sure I could ask for much more in terms of R&R.
I also felt less guilty about not being more active. It was harder being kind of a slug in Europe. The trip to Brussels was fun, though I'm not sure I really needed to go via Paris. There was a car holiday going on (no cars allowed downtown) on Sunday and it was interesting to see everyone out. I puttered around, ate waffles, tons of chocolate and ridiculous amount of shellfish at the Belga Queen. The conference on Tuesday was interesting and people seemed to like my presentation. I even got to drink some sparkling wine at lunch.
I was then off to Berlin to see Andres and Jose, Berlin was terrific in an industrial kind of way. We wandered around, saw lots of new art and generally hung out. Andres was subletting an apartment in the old East Berlin, concrete square, not much decoration on the walls and it was somehow appropriate when the electricity went out. Also probably fitting that the hot water went out afterward, but it was more exciting when the shower worked again the following day.
Berlin definitely seems like a city I'd want to go back to and have more time and energy to poke around. I then went to Paris for 24 hours which was great if short. I ate foie gras (twice), had a kir royale and enjoyed wandering around. Though the Musee d'Orsay was less exciting for me now than the last time I was there. I was somewhat pooped, my feet hurt and was actually pretty happy to be heading home.
I also managed to get a cold on the flight back, but it hasn't been terrible. I was sneezy and then coughing - and I'm guessing those around me this past week weren't totally thrilled but it was reassuring to have a cold and be okay. My immune system seems to be working and I'm optimistic that the cough won't last a good two months. I'm taking these all to be good omens. I did also start taking tamoxifen last week and knock wood that has been without side effects thus far.
In other news, its been about a year since I was first diagnosed. I'm sad I'm still dealing with things, and did totally breakdown when having a mammogram on Wednesday. Not really sure why I need to keep getting tests that have shown themselves to be ineffective. I really didn't like being in the space, partly because the last time I was there I was getting fitted with a wire before the first lumpectomy. I kept thinking that if that had worked, I'd be done now and moving on with my life.
Instead, I'm going to need to start reconstruction and not totally happy about it. It will be fine and I'm optimistic that this coming year will be better than the last but I still would rather be done. Otherwise, I need to clean up and organize the random stuff that seems to be all over the place both at work and home. And there is a stack of projects I need to finish.
Sorry, I've been so AWOL - in part this is a good sign - I post less when I have other things going on. But it also is related to my caving and going on facebook. Updating in multiple places, apparently is hard, and typing on my iphone seems more conducive to posts that are supposed to be short. I'd hate to imagine what my reliability would be if I started twittering too.
Thank you all for your support through this past year. I promise to try and write more regularly now that both my laptop and arms seem to work.
Kim
Visiting with Tal & Paul was fun, if not filled with sun-drenched days. It rained on Monday and was cloudy Tuesday but the hanging out and relaxing time was terrific. We sat around, they cooked and we did go see a local garden that had a lovely collection of sculpture, beautiful flowers, butterflies and some of the most amazing Oak trees you could imagine. They also have a zoo and some animals, that we didn't get to see too much of. Lots of good food, some sun time and shopping - I'm not sure I could ask for much more in terms of R&R.
I also felt less guilty about not being more active. It was harder being kind of a slug in Europe. The trip to Brussels was fun, though I'm not sure I really needed to go via Paris. There was a car holiday going on (no cars allowed downtown) on Sunday and it was interesting to see everyone out. I puttered around, ate waffles, tons of chocolate and ridiculous amount of shellfish at the Belga Queen. The conference on Tuesday was interesting and people seemed to like my presentation. I even got to drink some sparkling wine at lunch.
I was then off to Berlin to see Andres and Jose, Berlin was terrific in an industrial kind of way. We wandered around, saw lots of new art and generally hung out. Andres was subletting an apartment in the old East Berlin, concrete square, not much decoration on the walls and it was somehow appropriate when the electricity went out. Also probably fitting that the hot water went out afterward, but it was more exciting when the shower worked again the following day.
Berlin definitely seems like a city I'd want to go back to and have more time and energy to poke around. I then went to Paris for 24 hours which was great if short. I ate foie gras (twice), had a kir royale and enjoyed wandering around. Though the Musee d'Orsay was less exciting for me now than the last time I was there. I was somewhat pooped, my feet hurt and was actually pretty happy to be heading home.
I also managed to get a cold on the flight back, but it hasn't been terrible. I was sneezy and then coughing - and I'm guessing those around me this past week weren't totally thrilled but it was reassuring to have a cold and be okay. My immune system seems to be working and I'm optimistic that the cough won't last a good two months. I'm taking these all to be good omens. I did also start taking tamoxifen last week and knock wood that has been without side effects thus far.
In other news, its been about a year since I was first diagnosed. I'm sad I'm still dealing with things, and did totally breakdown when having a mammogram on Wednesday. Not really sure why I need to keep getting tests that have shown themselves to be ineffective. I really didn't like being in the space, partly because the last time I was there I was getting fitted with a wire before the first lumpectomy. I kept thinking that if that had worked, I'd be done now and moving on with my life.
Instead, I'm going to need to start reconstruction and not totally happy about it. It will be fine and I'm optimistic that this coming year will be better than the last but I still would rather be done. Otherwise, I need to clean up and organize the random stuff that seems to be all over the place both at work and home. And there is a stack of projects I need to finish.
Sorry, I've been so AWOL - in part this is a good sign - I post less when I have other things going on. But it also is related to my caving and going on facebook. Updating in multiple places, apparently is hard, and typing on my iphone seems more conducive to posts that are supposed to be short. I'd hate to imagine what my reliability would be if I started twittering too.
Thank you all for your support through this past year. I promise to try and write more regularly now that both my laptop and arms seem to work.
Kim
Thursday, September 17, 2009
Done with Radiation - Fall Can Officially Begin
Finished radiation yesterday and celebrated by going on CNBC to discuss first time homebuyer tax credits. Who says I don't know how to party?
I am happy to be done with radiation and it ended just in time as the weather turned rainy and cold again. The powers that be did listen and earlier this week did feel like summer. I am happy to be done with radiation and looking forward to going back to life without daily doctor's appointments. I got a certificate for completing radiation and BoSoxFox brought in cake (flourless chocolate cake and German chocolate cake) to celebrate. I also went out for drinks to celebrate. When I got home I received a gift from the ladies of taxation in Cambridge - which was Burdoch's chocolate. Do we all sense a theme here per chance? Thank you all for your well wishes and support over the last year. It has helped a lot, though I can't believe it's been almost a year since this whole thing had begun.
As for CNBC http://www.cnbc.com/id/15840232?video=1258448442&play=1 well that had to do with the first-time homebuyers tax credit. Something that probably worked better as stimulus than we thought it would but seems like it might be yet another temporary tax expenditure that becomes permanent. Like what we need is more incentives in housing over other investments. Of course, according to the realtors the only thing standing between the country and 5-6 GDP growth in the current year is an extension and expansion of the housing credit. Isn't using housing purchases to pull us out of a downturn what got us into this mess in the first place? I've also learned I need to figure out how to smile while on camera and finish a thought once I start it.
In any case, I am off to Europe on Saturday for a week to talk about higher education tax credits. I'm guessing this will be more celebratory and involve (surprise, surprise) the eating and purchase of copious amounts of Belgian (and probably German and French) chocolate and less copious amounts of beer and foie gras. I might actually have a problem here - is it sad to think that if I developed a chocolate allergy that might be more devastating to my life than cancer?
Okay, so not really. I will probably not blog until I'm back from the old country. Stay out of trouble and for those of you of the faith Shana Tova or Happy New Year.
Kim
I am happy to be done with radiation and it ended just in time as the weather turned rainy and cold again. The powers that be did listen and earlier this week did feel like summer. I am happy to be done with radiation and looking forward to going back to life without daily doctor's appointments. I got a certificate for completing radiation and BoSoxFox brought in cake (flourless chocolate cake and German chocolate cake) to celebrate. I also went out for drinks to celebrate. When I got home I received a gift from the ladies of taxation in Cambridge - which was Burdoch's chocolate. Do we all sense a theme here per chance? Thank you all for your well wishes and support over the last year. It has helped a lot, though I can't believe it's been almost a year since this whole thing had begun.
As for CNBC http://www.cnbc.com/id/15840232?video=1258448442&play=1 well that had to do with the first-time homebuyers tax credit. Something that probably worked better as stimulus than we thought it would but seems like it might be yet another temporary tax expenditure that becomes permanent. Like what we need is more incentives in housing over other investments. Of course, according to the realtors the only thing standing between the country and 5-6 GDP growth in the current year is an extension and expansion of the housing credit. Isn't using housing purchases to pull us out of a downturn what got us into this mess in the first place? I've also learned I need to figure out how to smile while on camera and finish a thought once I start it.
In any case, I am off to Europe on Saturday for a week to talk about higher education tax credits. I'm guessing this will be more celebratory and involve (surprise, surprise) the eating and purchase of copious amounts of Belgian (and probably German and French) chocolate and less copious amounts of beer and foie gras. I might actually have a problem here - is it sad to think that if I developed a chocolate allergy that might be more devastating to my life than cancer?
Okay, so not really. I will probably not blog until I'm back from the old country. Stay out of trouble and for those of you of the faith Shana Tova or Happy New Year.
Kim
Thursday, September 10, 2009
Time for a boost
Sorry I've been so lax about updating - but I'm going to blame it on the busted computer. The last couple of weeks have been a little hectic and I just got back from a trip to San Francisco which was great and totally neccessary after a week of too many medical appointments.
First off - I'm done with the main set of radiation treatments and on to the 5 days of boosts. That means they are irradiating a smaller area closer to the surface to try and make sure there are no cancer cells lurking in the scar or skin. I am just happy that it means that my underarm will be out of the field of treatment as it was kind of a mess last week. I will be done with radiation (and treatment :)) next Wednesday. Though I do get to start taking Tamoxifen soon.
San Francisco was great - I got to see a bunch of folks, eat a lot of good food and have 4 whole days without lasers irradiating my body. I've decided that there is nowhere better to recuperate and recover one's sanity than Ellen and Rob's and have already told them to be on call for my (next?) breakdown. Of course, knowing one can run a sanitarium in one's home might give them more career options.
The week before I left was another story. It is never good when you end up sobbing in a catholic school parking lot - especially when you are jewish.
On Monday my underarm really started to hurt. The skin was tired of being irradiated and after meeting with the physical therapist, I had been doing some exercises that involved scooping out that area. (Yes, I do in fact have lymphedema which required buying a compression sleeve and glove for flying.) The skin was raw and red and in a couple of places looked like it was totally scraped away. I talked to folks at Radiation about it at Wednesday's appointment and they were very sympathetic and gave me more creams and lotions and tried reassuring me that it looked way better than what other people had at this point in treatment. They did suggest I take some narcotics at night for the pain and to help me sleep - something I hadn't been doing very much of because it hurt so much.
Later that day, I also met with the orthopedist, who confirmed I had a break in my elbow - he thought the wrist was okay but might have had torn ligaments. It was healing and he thought the fact that I had stopped wearing the sling was a good thing. He signed off on the trips to CA and Europe and sent me on my way, with the pronouncement that I am a tough cookie - I think that is a medical diagnosis. Wednesday evening I took a percocet which helped with the pain but didn't really lead to my sleeping.
Which takes us to Thursday - a day where I had radiation at 9:00, an appointment with my oncologist at 10:30, followed by bloodwork and mediport cleaning. Then I had a lunch reservation at 1:15(Kinkaed's which was delicious) and physical therapy at 4:00. Well the percocet didn't help me sleep (3rd night with little sleep) but did make me kind of spacy and weepy to be driving around.
I went to Radiation and then headed over to G-town. Well traffic was horrible but I had plenty of time. I turned from Wisconsin onto Reservoir Rd and then had to turn left because the street was closed. What followed was 30 minutes of circling and trying to get to the hospital only to be faced with yet another blocked street. No sleep, narcotics and it hurt everytime I turned the steering wheel. I ended up at the other side of G-town and asked about what roads were open only to be told things that weren't true. None of the dozens of folks blocking the streets or tearing up the roads could tell me what streets were open and how I could get to the hospital.
15 minutes in I was sobbing as I drove. 30 minutes in I turned into what I thought was a side entrance to the University but was a Catholic High School. The parking guard and a passing nun took pity on me and tried calming me down. They suggested I just leave my car parked somewhere and walk - and then said I could leave my car in their parking lot. I'm hoping I would have realized I could have just stopped and parked my car on my own if I was a little less spacy or in less pain. In any case - the car was parked and on my way out of their campus the parking guard asked for my name and phone number so the sister could pray for me and handed me a rosary. It was great to have people be nice. I made it to the hospital, and to my other appointments and it all went okay if it was a little hectic.
Can someone explain to me why DC decided to repave the streets in September. Couldn't they have done it while all the schools along Reservoir were closed and no one was around in August? Also, shouldn't there be signs posted as to how to detour to the hospital? It's a hospital for god's sake - what if someone was actually hurt?
That night I met some friends for dinner and drinks and have to admit a couple of strawberry-lychee champagne drinks at Founding Farmers worked much better at getting me to sleep. I took off the next day to California - thanks to Lek, Peggy and Tammy for making my airport time so easy in each direction - and I managed to do it without breaking into tears at all.
United let me check my bag onto an earlier connecting flight, let me go on that flight (we won't ask why I was booked with a 3 hour layover in the first place when my physical airplane was the one going from San Diego to SF) and a gate agent on the red-eye back changed my seat to an economy plus bulkhead window seat. (We won't talk about the fact that if you by the economy plus up-grade in advance and then change your flight you are supposed to lose the up-grade.)
Now, I'm back and feel like I probably can handle the last few days of radiation. My arm and skin look okay and I will be happy for this to be over and to move on to my year of beautification. (How we will be referring to the plastic surgery.)
First off - I'm done with the main set of radiation treatments and on to the 5 days of boosts. That means they are irradiating a smaller area closer to the surface to try and make sure there are no cancer cells lurking in the scar or skin. I am just happy that it means that my underarm will be out of the field of treatment as it was kind of a mess last week. I will be done with radiation (and treatment :)) next Wednesday. Though I do get to start taking Tamoxifen soon.
San Francisco was great - I got to see a bunch of folks, eat a lot of good food and have 4 whole days without lasers irradiating my body. I've decided that there is nowhere better to recuperate and recover one's sanity than Ellen and Rob's and have already told them to be on call for my (next?) breakdown. Of course, knowing one can run a sanitarium in one's home might give them more career options.
The week before I left was another story. It is never good when you end up sobbing in a catholic school parking lot - especially when you are jewish.
On Monday my underarm really started to hurt. The skin was tired of being irradiated and after meeting with the physical therapist, I had been doing some exercises that involved scooping out that area. (Yes, I do in fact have lymphedema which required buying a compression sleeve and glove for flying.) The skin was raw and red and in a couple of places looked like it was totally scraped away. I talked to folks at Radiation about it at Wednesday's appointment and they were very sympathetic and gave me more creams and lotions and tried reassuring me that it looked way better than what other people had at this point in treatment. They did suggest I take some narcotics at night for the pain and to help me sleep - something I hadn't been doing very much of because it hurt so much.
Later that day, I also met with the orthopedist, who confirmed I had a break in my elbow - he thought the wrist was okay but might have had torn ligaments. It was healing and he thought the fact that I had stopped wearing the sling was a good thing. He signed off on the trips to CA and Europe and sent me on my way, with the pronouncement that I am a tough cookie - I think that is a medical diagnosis. Wednesday evening I took a percocet which helped with the pain but didn't really lead to my sleeping.
Which takes us to Thursday - a day where I had radiation at 9:00, an appointment with my oncologist at 10:30, followed by bloodwork and mediport cleaning. Then I had a lunch reservation at 1:15(Kinkaed's which was delicious) and physical therapy at 4:00. Well the percocet didn't help me sleep (3rd night with little sleep) but did make me kind of spacy and weepy to be driving around.
I went to Radiation and then headed over to G-town. Well traffic was horrible but I had plenty of time. I turned from Wisconsin onto Reservoir Rd and then had to turn left because the street was closed. What followed was 30 minutes of circling and trying to get to the hospital only to be faced with yet another blocked street. No sleep, narcotics and it hurt everytime I turned the steering wheel. I ended up at the other side of G-town and asked about what roads were open only to be told things that weren't true. None of the dozens of folks blocking the streets or tearing up the roads could tell me what streets were open and how I could get to the hospital.
15 minutes in I was sobbing as I drove. 30 minutes in I turned into what I thought was a side entrance to the University but was a Catholic High School. The parking guard and a passing nun took pity on me and tried calming me down. They suggested I just leave my car parked somewhere and walk - and then said I could leave my car in their parking lot. I'm hoping I would have realized I could have just stopped and parked my car on my own if I was a little less spacy or in less pain. In any case - the car was parked and on my way out of their campus the parking guard asked for my name and phone number so the sister could pray for me and handed me a rosary. It was great to have people be nice. I made it to the hospital, and to my other appointments and it all went okay if it was a little hectic.
Can someone explain to me why DC decided to repave the streets in September. Couldn't they have done it while all the schools along Reservoir were closed and no one was around in August? Also, shouldn't there be signs posted as to how to detour to the hospital? It's a hospital for god's sake - what if someone was actually hurt?
That night I met some friends for dinner and drinks and have to admit a couple of strawberry-lychee champagne drinks at Founding Farmers worked much better at getting me to sleep. I took off the next day to California - thanks to Lek, Peggy and Tammy for making my airport time so easy in each direction - and I managed to do it without breaking into tears at all.
United let me check my bag onto an earlier connecting flight, let me go on that flight (we won't ask why I was booked with a 3 hour layover in the first place when my physical airplane was the one going from San Diego to SF) and a gate agent on the red-eye back changed my seat to an economy plus bulkhead window seat. (We won't talk about the fact that if you by the economy plus up-grade in advance and then change your flight you are supposed to lose the up-grade.)
Now, I'm back and feel like I probably can handle the last few days of radiation. My arm and skin look okay and I will be happy for this to be over and to move on to my year of beautification. (How we will be referring to the plastic surgery.)
Friday, August 21, 2009
Turns out my arm and my laptop are still broken
The x-rays came back this morning and I have a non-displaced fracture ... in my wrist. I kind of had the feeling that if anything cracked it may have been the wrist - it hurt first and is still achey. The blood pooling in the elbow made that more acute after the fall, but it seems more or less fine now. There's nothing to be done, except I'm probably staying away from weight-lifting activities for a little longer. I figure when I see a physical therapist, I can now get exercises for both arms.
As for my laptop, it works - sort of. I can log on, not see the advanced virus removal pop-ups :)but while I can access my work e-mail or facebook nothing shows up. I know I have messages but can't read them. Fun city. What this means to anyone trying to get in touch - e-mail me at gmail, call on my home number or expect slower response times in the short term. So I now have a barely functional computer and cell-phone. We could argue my possessions feel sympathy for me but the truth is they are taking the brunt of my spaciness/flakiness potentially treatment related. (The phone hasn't really recovered from the chicken soup bath.) I might go out and buy an i-phone this weekend. (How heavy are they?)
Otherwise, I'm actually feeling pretty good; not getting enough sleep but I'm being more active and have been walking to work about half the time in the swampland. Next week, I might even start exercising at a gym. We'll see.
I've been somewhat preoccupied trying to figure out September/October travel plans. There's a trip to the Bay Area Labor Day weekend that I might get permission to stay a couple of more days. Right now my last treatment (without boosts) is that Tuesday, but my doctor seemed to think taking a break wouldn't be terrible. Then I'm going to a conference in Brussels, I'm thinking of tacking on some extra days and trying to figure out where to go. (If I meet up with folks its probably somewhere I haven't been, if not probably Paris or London.)
I think I need to limit it to one other place - see discussion of non-functional arms above. I also made a reservation for 2 at a somewhat fancy restaurant my friend recommended in Brussels for Sunday night - so if you have any recommendations of people I should accost I'd take that info too.
In October, I think I'm going to the beach with some college friends. I'm hoping its warm enough to at least wade in the North Carolina water but we'll see.
As for my laptop, it works - sort of. I can log on, not see the advanced virus removal pop-ups :)but while I can access my work e-mail or facebook nothing shows up. I know I have messages but can't read them. Fun city. What this means to anyone trying to get in touch - e-mail me at gmail, call on my home number or expect slower response times in the short term. So I now have a barely functional computer and cell-phone. We could argue my possessions feel sympathy for me but the truth is they are taking the brunt of my spaciness/flakiness potentially treatment related. (The phone hasn't really recovered from the chicken soup bath.) I might go out and buy an i-phone this weekend. (How heavy are they?)
Otherwise, I'm actually feeling pretty good; not getting enough sleep but I'm being more active and have been walking to work about half the time in the swampland. Next week, I might even start exercising at a gym. We'll see.
I've been somewhat preoccupied trying to figure out September/October travel plans. There's a trip to the Bay Area Labor Day weekend that I might get permission to stay a couple of more days. Right now my last treatment (without boosts) is that Tuesday, but my doctor seemed to think taking a break wouldn't be terrible. Then I'm going to a conference in Brussels, I'm thinking of tacking on some extra days and trying to figure out where to go. (If I meet up with folks its probably somewhere I haven't been, if not probably Paris or London.)
I think I need to limit it to one other place - see discussion of non-functional arms above. I also made a reservation for 2 at a somewhat fancy restaurant my friend recommended in Brussels for Sunday night - so if you have any recommendations of people I should accost I'd take that info too.
In October, I think I'm going to the beach with some college friends. I'm hoping its warm enough to at least wade in the North Carolina water but we'll see.
Tuesday, August 18, 2009
Halfway through
Assuming I don't need any boosts, I just hit the midway point of radiation. I've had 14 treatments and it hasn't been that bad thus far (knock wood). The increased discomfort from radiation on my left side is being offset by the decreasing achiness in my right arm. I do feel somewhat like Frankenstein's monster - I have all the right parts but they are askew. My arms kind of hurt, chest is tight and hard and no, not in a good way like from exercise. But I seem to be doing okay. Last week, I attended some conferences and actually finished a draft of a paper (thank you Tracy), met friends for lunch and dinner and generally had a life.
This weekend after a fun dinner Friday night that probably went a little too late, my poor computer came down with spyware. Lesson: don't check e-mail while intoxicated. (Yes going a little too late is code for too much drinking.) If you get a message from advanced virus removal, make sure not to click on anything. I didn't click on the pop-up but did hit the icon in the corner by mistake. (It has windows colors.) I'm guessing it was the drink, bud suddenly I am down the rabbithole. Hopefully, my computer can be cleaned; it has been given over to professionals.
I did drive my car and went to the farmers' market on Sunday which was super-exciting and means I have a house full of fruits and vegetables. Otherwise, things are chugging along. I have enough trips planned in the near future to not be sad about being one of 10 people left in DC and
I'm hoping for a productive but mainly uneventful week.
This weekend after a fun dinner Friday night that probably went a little too late, my poor computer came down with spyware. Lesson: don't check e-mail while intoxicated. (Yes going a little too late is code for too much drinking.) If you get a message from advanced virus removal, make sure not to click on anything. I didn't click on the pop-up but did hit the icon in the corner by mistake. (It has windows colors.) I'm guessing it was the drink, bud suddenly I am down the rabbithole. Hopefully, my computer can be cleaned; it has been given over to professionals.
I did drive my car and went to the farmers' market on Sunday which was super-exciting and means I have a house full of fruits and vegetables. Otherwise, things are chugging along. I have enough trips planned in the near future to not be sad about being one of 10 people left in DC and
I'm hoping for a productive but mainly uneventful week.
Thursday, August 13, 2009
No death panels for me
So while I should be re-reading my paper on local tax options, I find myself obsessed with the mayhem which seems to be the healthcare debate. I don't think people protesting is a bad thing but the ridiculousness of the claims and allegations is preposterous. Yes, you have time to get all philosophical while laying on a table every morning getting zapped with radiation.
How did paying for optional counseling about end-of-life issues turn into mandatory meetings with death panels? Thus far every time I've been in the emergency room or hospital, I'm asked about whether I have an advanced directive, whether I want to have an advanced directive, whether I want to talk to someone about having an advanced directive and given I don't have an advanced directive what do I want them to do in terms of resuscitation and emergency care, in case things go horribly, horribly wrong. I always say I don't want them to get there and if they manage to put me in a vegetative state while getting my arm x-rayed I won't be happy and but I don't need extraordinary measures.
I've never felt like I was being pressured to say not to try and save my life, and I do understand why people don't want to think about these things. BUT doctors and staff ALREADY need to have this conversation so what we are talking about is paying for it. It is probably time for me to just fill out the paperwork because while I never want to think about these issues - having your wishes spelled out can't hurt.
My colleague Howard is more eloquent and has been thinking about end of life issues for a long time. If things are at a point where you can't answer these questions, it seems like having the option to have a conversation about what the different measures that may be taken would be a good thing.
Second set of crazy, how do people believe medicare isn't a government program? That's government money paying for your health insurance - yes you paid payroll taxes all those years but probably not enough to cover the actual cost of 40 years of health care. Are those protesting against a public option while saying it threatens medicare really not aware that this is a government run health insurance program? Maybe they think expansion to include others will make the program unsustainable. But current cost and demographic trends mean that current coverage levels of MEDICARE are already unsustainable. The option of maintaining current levels of coverage with the current costs and an aging population, while not increasing taxes isn't going to work.
I understand libertarians wanting government out of people's lives but the embracing of medicare (and yelling about any suggestion of cost containment) while rejecting the idea of other public programs seems a little nuts.
Third there is the whole idea that we will need to make hard choices and sometimes you don't want someone to get any possible treatment. Even if cost isn't an issue, medical treatment can be hugely unpleasant and a big pain in the ass (or in my case, the chest). This year hasn't been fun but dealing with discomfort and bad side effects is worth it if I figure it might be buying me another 40 years. If it was my 90 year old grandmother I wouldn't want her to put up with some of the stuff I've had to deal with. Of course, she has her own set of medical issues and a ton of pills to take.
Which gets us back to the whole question of what we want to do with respect to health care. It would be nice if the town halls going on throughout the country could involve actual conversation and debate of the pros and cons of different options. (Public option vs. co-ops for example) But that would mean ratcheting down the heat and letting people discuss the hard choices that are needed rather than just torpedoing the whole effort.
Personally, I am doing okay - I don't think my arm is broken but will need another x-ray to confirm this and seem to be handling the radiation and Boniva drug trial pretty well. Though the Boniva seems to make me sneeze 5 or 6 times in a row every morning.
Weird, medical questions are personal and hard and can be incredibly expensive. But in one way or another we as a society will need to figure this all out. Using facts to do this seems like a no-brainer but maybe that's the chemo talking.
How did paying for optional counseling about end-of-life issues turn into mandatory meetings with death panels? Thus far every time I've been in the emergency room or hospital, I'm asked about whether I have an advanced directive, whether I want to have an advanced directive, whether I want to talk to someone about having an advanced directive and given I don't have an advanced directive what do I want them to do in terms of resuscitation and emergency care, in case things go horribly, horribly wrong. I always say I don't want them to get there and if they manage to put me in a vegetative state while getting my arm x-rayed I won't be happy and but I don't need extraordinary measures.
I've never felt like I was being pressured to say not to try and save my life, and I do understand why people don't want to think about these things. BUT doctors and staff ALREADY need to have this conversation so what we are talking about is paying for it. It is probably time for me to just fill out the paperwork because while I never want to think about these issues - having your wishes spelled out can't hurt.
My colleague Howard is more eloquent and has been thinking about end of life issues for a long time. If things are at a point where you can't answer these questions, it seems like having the option to have a conversation about what the different measures that may be taken would be a good thing.
Second set of crazy, how do people believe medicare isn't a government program? That's government money paying for your health insurance - yes you paid payroll taxes all those years but probably not enough to cover the actual cost of 40 years of health care. Are those protesting against a public option while saying it threatens medicare really not aware that this is a government run health insurance program? Maybe they think expansion to include others will make the program unsustainable. But current cost and demographic trends mean that current coverage levels of MEDICARE are already unsustainable. The option of maintaining current levels of coverage with the current costs and an aging population, while not increasing taxes isn't going to work.
I understand libertarians wanting government out of people's lives but the embracing of medicare (and yelling about any suggestion of cost containment) while rejecting the idea of other public programs seems a little nuts.
Third there is the whole idea that we will need to make hard choices and sometimes you don't want someone to get any possible treatment. Even if cost isn't an issue, medical treatment can be hugely unpleasant and a big pain in the ass (or in my case, the chest). This year hasn't been fun but dealing with discomfort and bad side effects is worth it if I figure it might be buying me another 40 years. If it was my 90 year old grandmother I wouldn't want her to put up with some of the stuff I've had to deal with. Of course, she has her own set of medical issues and a ton of pills to take.
Which gets us back to the whole question of what we want to do with respect to health care. It would be nice if the town halls going on throughout the country could involve actual conversation and debate of the pros and cons of different options. (Public option vs. co-ops for example) But that would mean ratcheting down the heat and letting people discuss the hard choices that are needed rather than just torpedoing the whole effort.
Personally, I am doing okay - I don't think my arm is broken but will need another x-ray to confirm this and seem to be handling the radiation and Boniva drug trial pretty well. Though the Boniva seems to make me sneeze 5 or 6 times in a row every morning.
Weird, medical questions are personal and hard and can be incredibly expensive. But in one way or another we as a society will need to figure this all out. Using facts to do this seems like a no-brainer but maybe that's the chemo talking.
Wednesday, August 5, 2009
Oops
So just when things seem to be getting into a reasonable pattern - radiation every morning but limited numbers of tests and I picked up the drugs for the stage 3 study which just requires me taking a pill every morning.
I fall...
On my way to visit my friend in the hospital.
I kind of stumbled and then fell down - skinned my knees, and fell on my right arm. People were very nice and rushed over, after sitting for a bit I had people help me up. (I had been using my right arm to help stand up.) After cleaning myself up I figured I may as well head over to visit my friend -as I wasn't getting work done. After sitting for an hour (with an ice pack that her nurses thoughtfully gave me) I realized I couldn't unbend my arm. 3 hours and x-rays later the doctor gave me a sling didn't think I broke or dislocated anything - and my elbow was bruised and had some blood gathering. His diagnosis was to take motrin or naproxin to get the swelling down and percocet or oxycodone for breakthrough pain and keep my arm in the sling for 5 days to take the pressure off. Is it a bad response when a doctor asks you what you like taking for pain and you say you have a drawer full of pills so he should just tell you what he wants you to take?
BoSoxFox was upstairs visiting our friend (who should get her own nickname) and graciously took me home, took out my trash and most importantly moved my car into a Monday or Tuesday spot so I don't need to worry about street cleaning. It all might be my need to stay the center of attention - how can someone else be sick? It also might be a test to see how much BSF can take before either having a nervous breakdown or deciding she really needs a new (and healthier) set of friends.
On the upside I fell on my good arm - lord knows what would be happening if I landed on the arm without lymph nodes. Of course it also means I landed on my good arm - so suddenly my delicate left arm is having to do things like carry my purse and open things. This morning, I went to radiation, then cabbed over to Georgetown to pick up the drugs for the trial (Bonniva pills to take daily) and was home by 11. I have since spent most of the day in bed napping and reading.
Then I got a call from GW- it seems like after having someone else look at the x-ray it might be a non-displaced radial fracture that didn't show up as a definite break at the point where my arm bone meets the elbow. It means checking in with orthopedics - though when I called they didn't seem to have any appointments until September unless it is an emergency. I'm waiting for a call back tomorrow. My arm is actually feeling better now and unbending some (and I seem able to type with it). The person who called basically thought I should use the sling they gave me - be seen sometime next week and probably see a physical therapist. So now I'm guessing I can have range of motion exercises for each arm. My (ex)boss had a physical therapist he really liked and given he is off to Syracuse she might have an opening in her schedule.
On the upside - I do realize the humor and ridiculousness of it all, and a week into radiation my treatment seems to be going well. Apparently my life can't get too calm - but I'm much happier dealing with a bruised good elbow than other complications. I'm also thinking that taking the Boniva (the bone density drug) probably will be a good thing for my bones, though I might start Friday instead of tomorrow. (I have to take the pill with a glass of water and not take anything else for a half hour - depending on how I'm feeling I think taking the motrin in the morning might trump starting the trial a day earlier. )
Kim
PS Not sure I'm sharing this with my mother so for those of you related to me - try not to mention it.
I fall...
On my way to visit my friend in the hospital.
I kind of stumbled and then fell down - skinned my knees, and fell on my right arm. People were very nice and rushed over, after sitting for a bit I had people help me up. (I had been using my right arm to help stand up.) After cleaning myself up I figured I may as well head over to visit my friend -as I wasn't getting work done. After sitting for an hour (with an ice pack that her nurses thoughtfully gave me) I realized I couldn't unbend my arm. 3 hours and x-rays later the doctor gave me a sling didn't think I broke or dislocated anything - and my elbow was bruised and had some blood gathering. His diagnosis was to take motrin or naproxin to get the swelling down and percocet or oxycodone for breakthrough pain and keep my arm in the sling for 5 days to take the pressure off. Is it a bad response when a doctor asks you what you like taking for pain and you say you have a drawer full of pills so he should just tell you what he wants you to take?
BoSoxFox was upstairs visiting our friend (who should get her own nickname) and graciously took me home, took out my trash and most importantly moved my car into a Monday or Tuesday spot so I don't need to worry about street cleaning. It all might be my need to stay the center of attention - how can someone else be sick? It also might be a test to see how much BSF can take before either having a nervous breakdown or deciding she really needs a new (and healthier) set of friends.
On the upside I fell on my good arm - lord knows what would be happening if I landed on the arm without lymph nodes. Of course it also means I landed on my good arm - so suddenly my delicate left arm is having to do things like carry my purse and open things. This morning, I went to radiation, then cabbed over to Georgetown to pick up the drugs for the trial (Bonniva pills to take daily) and was home by 11. I have since spent most of the day in bed napping and reading.
Then I got a call from GW- it seems like after having someone else look at the x-ray it might be a non-displaced radial fracture that didn't show up as a definite break at the point where my arm bone meets the elbow. It means checking in with orthopedics - though when I called they didn't seem to have any appointments until September unless it is an emergency. I'm waiting for a call back tomorrow. My arm is actually feeling better now and unbending some (and I seem able to type with it). The person who called basically thought I should use the sling they gave me - be seen sometime next week and probably see a physical therapist. So now I'm guessing I can have range of motion exercises for each arm. My (ex)boss had a physical therapist he really liked and given he is off to Syracuse she might have an opening in her schedule.
On the upside - I do realize the humor and ridiculousness of it all, and a week into radiation my treatment seems to be going well. Apparently my life can't get too calm - but I'm much happier dealing with a bruised good elbow than other complications. I'm also thinking that taking the Boniva (the bone density drug) probably will be a good thing for my bones, though I might start Friday instead of tomorrow. (I have to take the pill with a glass of water and not take anything else for a half hour - depending on how I'm feeling I think taking the motrin in the morning might trump starting the trial a day earlier. )
Kim
PS Not sure I'm sharing this with my mother so for those of you related to me - try not to mention it.
Saturday, August 1, 2009
All aglow
Back from Caneel Bay. The trip was great and totally relaxing. I ended up snorkeling a lot, swimming some and basically hanging out on the beach. I read 2 books--both pretty trashy--and did manage to leave the grounds one night for dinner. In general things were good, I did have a Hitchcock moment the last day when a bird swooped down and stole a piece of bacon off my plate at breakfast, as I was carrying my plate. I swear he was then eyeing me for the rest of the meal, but maybe it was a sign I should cut out the processed meats. Later that morning we were in the water and probably 20 birds suddenly swarmed us - though in all likelihood they were more interested in the fish than me or Melissa. We were sad to leave and did manage to get splashed on the ferry ride back to St Thomas.
Thursday was a rude awakening from the trip, as I started radiation. So after swimming and laying on the beach for five days, I got to spend an hour trying to lie perfectly still on a table while people moved me around and drew on me with blue marker. I tried pretending I was still on the beach and that my lounge chair was maybe just not so comfortable.
Friday's zapping was much faster and less eventful. Indeed, I think it actually took them longer to blend my iced soy latte (at the Illy, not the hospital) than it took for me to get treatment while on the table.
I then went to work where it was the last day for my boss and another person I work with. I ended up cutting the teary goodbyes short because I called the American Cancer Society to see about getting fitted with something that could even me out. (Yes, the aftermath of looking at pictures made it quite clear how lopsided I currently am.) It turns out they do fittings on Friday until 2:30 and the office is 2 blocks from my house. I cut out of work at 1:30 and managed to get to ACS and they gave me a cotton puff that helps with symmetry and is pretty light.
I then headed home and actually took a nap. I'd blame the radiation, but I'm guessing it was much more likely due to general fatigue related to the trip, then headed out for dinner with some friends. I spent some time this afternoon with a friend who is having some gastro issues and needs to go into the hospital for antibiotics. If nothing else, this year has given me some expertise in hospital stays. I had all sorts of advice to give and opinions on what you should bring to the hospital and check in information. She's going to GW, so on the upside I can potentially stop in daily post-radiation.
Anyway, in happier news, my friend Lorien is getting married this weekend and my cousin Abby had her twins last weekend. Congratulations to all of you.
Friday's zapping was much faster and less eventful. Indeed, I think it actually took them longer to blend my iced soy latte (at the Illy, not the hospital) than it took for me to get treatment while on the table.
I then went to work where it was the last day for my boss and another person I work with. I ended up cutting the teary goodbyes short because I called the American Cancer Society to see about getting fitted with something that could even me out. (Yes, the aftermath of looking at pictures made it quite clear how lopsided I currently am.) It turns out they do fittings on Friday until 2:30 and the office is 2 blocks from my house. I cut out of work at 1:30 and managed to get to ACS and they gave me a cotton puff that helps with symmetry and is pretty light.
I then headed home and actually took a nap. I'd blame the radiation, but I'm guessing it was much more likely due to general fatigue related to the trip, then headed out for dinner with some friends. I spent some time this afternoon with a friend who is having some gastro issues and needs to go into the hospital for antibiotics. If nothing else, this year has given me some expertise in hospital stays. I had all sorts of advice to give and opinions on what you should bring to the hospital and check in information. She's going to GW, so on the upside I can potentially stop in daily post-radiation.
Anyway, in happier news, my friend Lorien is getting married this weekend and my cousin Abby had her twins last weekend. Congratulations to all of you.
Monday, July 27, 2009
In Paradise
Yes i am lame for checking e-mail while in paradise. Melissa is off on a hike at the national park and i am taking a break inside between beach changes - yes there are 7 and while Melissa had to go to them all in one day - i will leisurely hit the last two today.
It is beautiful and incredibly relaxing. I'm snorkeling and doing weird arm movements in the ocean which i think should qualify the trip as physical (if not mental) therapy.
Will go outside soon.
Kim
It is beautiful and incredibly relaxing. I'm snorkeling and doing weird arm movements in the ocean which i think should qualify the trip as physical (if not mental) therapy.
Will go outside soon.
Kim
Friday, July 24, 2009
I can go on vacation
I just came out of the cancer closet on facebook and California has apparently closed its budget hole. Apparently I can now go off the grid.
http://www.sacbee.com/1095/story/2053031.html
http://www.sacbee.com/1095/story/2053031.html
Tests all seem fine
I haven't talked to my doctor but talked to the nurse organizing the stage 3 study and it seems that all my scans have come back normal :). Nothing seems to have metastasized. I'm trying to get somewhat organized and will head off to the beach.
Knock wood it seems like things are back on track and I'm hopeful after this week of tests and next week of relaxation and starting radiation things will get back into a more humdrum pattern.
Sorry I won't see Cali folks until September but I'm optimistic you will have solved all the states problems by then. Will try and post from the beach but we'll see how well that works. There might even be pictures.
Knock wood it seems like things are back on track and I'm hopeful after this week of tests and next week of relaxation and starting radiation things will get back into a more humdrum pattern.
Sorry I won't see Cali folks until September but I'm optimistic you will have solved all the states problems by then. Will try and post from the beach but we'll see how well that works. There might even be pictures.
Wednesday, July 22, 2009
I remember when tubes were fun
Looking forward to a time when the next time I spend this much time going in and out of tubes they are more vertical and I end up splashing into water. It seems like I get to have doctors appointments or tests every day this week but Thursday woo hoo.
Tuesday I met with my plastic surgeon who basically took more topless pictures (naturally) said I was healing well and said I should make an appointment for a month post radiation and surgery will be 3-6 months after radiation depending on how I am healing. I'm not supposed to diet but can exercise but he thinks I have just the right amount of stomach fat for my diep surgery. I'm guessing if I lose too much weight putting it back on with my friends Ben & Jerry and proclivity to eat tortured geese will work just fine.
I was supposed to have a bone scan on Tuesday but they oops scheduled it for Wednesday. So in the end I waited until 9:30 to see if the next person wouldn't show up (do people really not show up for bone scans? we're not talking teeth cleaning or eye tests). I then went and got coffee and headed to plastic surgery. I then met with the nurse in charge of the study I am potentially participating in. On the upside I was at work by 11:30, earlier than expected. On the downside I was at G-town for 1 1/2 hours before my first actual appointment and then ahem was going to have 3 hours to kill between the 9am shot and the 12noon scan. (Apparently we need 3 hours to have the dye make its way to my bones).
I did take out my frustration a wee bit on California.
I then had my 8am ct scan appointment this morning, showed up at 7:30 and hung around until 8:45 when I asked if they should call up to nuclear medicine because we were running late. They sent me upstairs first and commented that they were surprised that they would schedule the (radioactive)injection for afterward given I need to wait 3 hours for the scan. So I got my shot at 9, went back down and had my ct scans which required finding a nurse to access my port, and then finding heparin to flush befor de-accessing (not sure that is the expression) the port. And suddenly it was almost 11am. I edited my California blog and posted, had lunch and then went and had my bone scan.
I was done by 12:30 and it all went smoothly besides the fact that I seem to have to needlessly get up 1 1/2 hours earlier to just sit around. But 3 hours of spare time can be used up in a snap when things are delayed.
Its also amazing how tiring going in and out of machines can be. Though these two insights might be related.
Anyway - will post results when I know them- ideally tomorrow or Friday.
Tuesday I met with my plastic surgeon who basically took more topless pictures (naturally) said I was healing well and said I should make an appointment for a month post radiation and surgery will be 3-6 months after radiation depending on how I am healing. I'm not supposed to diet but can exercise but he thinks I have just the right amount of stomach fat for my diep surgery. I'm guessing if I lose too much weight putting it back on with my friends Ben & Jerry and proclivity to eat tortured geese will work just fine.
I was supposed to have a bone scan on Tuesday but they oops scheduled it for Wednesday. So in the end I waited until 9:30 to see if the next person wouldn't show up (do people really not show up for bone scans? we're not talking teeth cleaning or eye tests). I then went and got coffee and headed to plastic surgery. I then met with the nurse in charge of the study I am potentially participating in. On the upside I was at work by 11:30, earlier than expected. On the downside I was at G-town for 1 1/2 hours before my first actual appointment and then ahem was going to have 3 hours to kill between the 9am shot and the 12noon scan. (Apparently we need 3 hours to have the dye make its way to my bones).
I did take out my frustration a wee bit on California.
I then had my 8am ct scan appointment this morning, showed up at 7:30 and hung around until 8:45 when I asked if they should call up to nuclear medicine because we were running late. They sent me upstairs first and commented that they were surprised that they would schedule the (radioactive)injection for afterward given I need to wait 3 hours for the scan. So I got my shot at 9, went back down and had my ct scans which required finding a nurse to access my port, and then finding heparin to flush befor de-accessing (not sure that is the expression) the port. And suddenly it was almost 11am. I edited my California blog and posted, had lunch and then went and had my bone scan.
I was done by 12:30 and it all went smoothly besides the fact that I seem to have to needlessly get up 1 1/2 hours earlier to just sit around. But 3 hours of spare time can be used up in a snap when things are delayed.
Its also amazing how tiring going in and out of machines can be. Though these two insights might be related.
Anyway - will post results when I know them- ideally tomorrow or Friday.
Monday, July 20, 2009
All marked up and no place to go
Just got back from the radiation oncologist - she thinks the mastectomy was a total no-brainer, as is radiation. I should be having between 30-33 treatments starting next Thursday (yes, i get back from vacation on Wednesday). In the meantime, I was marked up, which was a surprise, and meet tomorrow with the plastic surgeon, the person in charge of the stage 3 trial of osteoperosis drugs, and have a bone density test. Wednesday I have ct scans and then my medical appointments for the week are done. (Two days with no tests and then St. John until Wednesday late, and then when I come back I start radiation on Thursday. I then get to find out which of the 3 arms--i.e., alternative treatments--of the study I am in on Monday August 3). It makes for a full and somewhat interesting life.
We also had a conference call with our board at work, and I basically got to explain that I am aware that states are in total meltdown but I seem to be filling my time with frivolous things like getting marked up and meeting with doctors. However, unlike the plastic surgeons, the radiation people wanted to actually take a picture of my face and, yes, I did ask if that meant they wanted me to put my shirt back on. (The answer was yes.) Unlike the plastic surgeons, the radiation folks just want my picture to make sure they are zapping the right person.
Will report more tomorrow.
Kim
We also had a conference call with our board at work, and I basically got to explain that I am aware that states are in total meltdown but I seem to be filling my time with frivolous things like getting marked up and meeting with doctors. However, unlike the plastic surgeons, the radiation people wanted to actually take a picture of my face and, yes, I did ask if that meant they wanted me to put my shirt back on. (The answer was yes.) Unlike the plastic surgeons, the radiation folks just want my picture to make sure they are zapping the right person.
Will report more tomorrow.
Kim
Sunday, July 19, 2009
Perspective and good doctors' visits
I had a good day on Thursday - good appointments with my doctors - I seem to be eligible to see about qualifying for a stage 3 trial that examines the use of drugs that build bone density. These are drugs used to prevent osteoperosis and they are checking if taking lowers the probability of breast cancer metastasizing into bones (the first place breast cancer will typically metastacisize(sp?) to. (This is what happened to Elizabeth Edwards.) I have a bone scan test tuesday and then a ct scan once back from st john and if results good can enter study.
My visit with the plastic surgeon also went well and my expander was expanded. This has evened me out somewhat though i might want one more fill - to try and get more symmetry. In general recovery has been okay and on the positive side expansion can happen during radiation (the markings and measurements are for below where any expansion occurs so will not be effected). Given they want to do the more involved DIEP tissue transfer reconstruction surgery they have the expander expanded far enough out for their purposes - which was to protect the skin. Scary how much saggier i am naturally than on the expanded side. Implants seem to fail and harden more once radiation is involved and the symmetry question is an issue.
Thursday's expansion has caused some discomfort and i am back temporarily on pain meds (percocet is my friend). We had a going away party for my boss on Thursday afternoon which seemed to go very well, despite or because of the presence of pain pills. I got to emcee and the party was the right mix of funny (snow theme) and making a little bit of fun of him and touching.
Len is a great guy and the vision behind the TPC and has been a terrific boss.
Last week I also spent time figuring out long term disability rules - which I am finally apparently eligible for and on as part of a program that allows one to work part time. I can work up to 75% given salary changes and can maintain eligibility to retrigger coverage if have other event in 6 months. Given the timing of radiation and then surgery (and more surgery) understanding the rules is key. Realistically between being tired, and all the doctor's visits I haven't gotten much actual work done so the 75% rate hasn't been a constraint. I'm hoping once I'm done with setting things up and on a radiation schedule work will become more of a regular activity.
In other news - I saw the new Harry Potter film yesterday (really liked it) and then Indian food for dinner with friends which was really fun and it was a beautiful day in DC. I was home and asleep by 9:00 though seemed to wake up every 90 minutes and wrote an original version of most of this at 2am. Took an ativan and nuprin at 4am and went to sleep for a longer period.
And now for a bit of perspective - I spent time Friday evening trying on bathing suits before the trip to Caneel Bay, and despite being 10-15 lbs heavier and in less good shape (back to the whole saggier issue) than I was last year, I thought I didn't look so bad. In fact was actually more happy with how the bathing suits looked than I was last year. Of course, with the scarring, and short hair and lopsidedness - the flab is the least of my concerns. Of course I've also come to terms I won't be picking anyone up on this trip (unlike of course all my prior vacations :) ).
So my friends, it is all about perspective. Tomorrow I meet with the radiation oncologist and ideally find out what the schedule for markings and zapping will be and then Tuesday I have an appointment for the bone scan, and with my plastic surgeon - the original one who will be in charge of reconstruction, my goal is to leave the plastic surgeon's office with a date (far in the future but definite) for reconstruction. I'm also hoping to meet with the nurse organizing the bone study. So while there's a shot I'll get some work done towards the end of the week it might not happen. (If they decide that having me in for my evaluation meeting so my doctor can decide the angles and possibly mark me this week that would be my highest priority.)
Now I'm spending time organizing my papers and possibly my clothes.
Peace out
Kim
PS I've decided that when i am in recovery mode from the diep surgery i will reread all the Harry Potter books - that is of course if they don't exceed the gallon of milk weight limit :).
PPS I am now on facebook if anyone wants "friending" let me know - I probably will take some pictures with me in them in St John so probably will disclose my breast cancer and this blog to a more public group then.
My visit with the plastic surgeon also went well and my expander was expanded. This has evened me out somewhat though i might want one more fill - to try and get more symmetry. In general recovery has been okay and on the positive side expansion can happen during radiation (the markings and measurements are for below where any expansion occurs so will not be effected). Given they want to do the more involved DIEP tissue transfer reconstruction surgery they have the expander expanded far enough out for their purposes - which was to protect the skin. Scary how much saggier i am naturally than on the expanded side. Implants seem to fail and harden more once radiation is involved and the symmetry question is an issue.
Thursday's expansion has caused some discomfort and i am back temporarily on pain meds (percocet is my friend). We had a going away party for my boss on Thursday afternoon which seemed to go very well, despite or because of the presence of pain pills. I got to emcee and the party was the right mix of funny (snow theme) and making a little bit of fun of him and touching.
Len is a great guy and the vision behind the TPC and has been a terrific boss.
Last week I also spent time figuring out long term disability rules - which I am finally apparently eligible for and on as part of a program that allows one to work part time. I can work up to 75% given salary changes and can maintain eligibility to retrigger coverage if have other event in 6 months. Given the timing of radiation and then surgery (and more surgery) understanding the rules is key. Realistically between being tired, and all the doctor's visits I haven't gotten much actual work done so the 75% rate hasn't been a constraint. I'm hoping once I'm done with setting things up and on a radiation schedule work will become more of a regular activity.
In other news - I saw the new Harry Potter film yesterday (really liked it) and then Indian food for dinner with friends which was really fun and it was a beautiful day in DC. I was home and asleep by 9:00 though seemed to wake up every 90 minutes and wrote an original version of most of this at 2am. Took an ativan and nuprin at 4am and went to sleep for a longer period.
And now for a bit of perspective - I spent time Friday evening trying on bathing suits before the trip to Caneel Bay, and despite being 10-15 lbs heavier and in less good shape (back to the whole saggier issue) than I was last year, I thought I didn't look so bad. In fact was actually more happy with how the bathing suits looked than I was last year. Of course, with the scarring, and short hair and lopsidedness - the flab is the least of my concerns. Of course I've also come to terms I won't be picking anyone up on this trip (unlike of course all my prior vacations :) ).
So my friends, it is all about perspective. Tomorrow I meet with the radiation oncologist and ideally find out what the schedule for markings and zapping will be and then Tuesday I have an appointment for the bone scan, and with my plastic surgeon - the original one who will be in charge of reconstruction, my goal is to leave the plastic surgeon's office with a date (far in the future but definite) for reconstruction. I'm also hoping to meet with the nurse organizing the bone study. So while there's a shot I'll get some work done towards the end of the week it might not happen. (If they decide that having me in for my evaluation meeting so my doctor can decide the angles and possibly mark me this week that would be my highest priority.)
Now I'm spending time organizing my papers and possibly my clothes.
Peace out
Kim
PS I've decided that when i am in recovery mode from the diep surgery i will reread all the Harry Potter books - that is of course if they don't exceed the gallon of milk weight limit :).
PPS I am now on facebook if anyone wants "friending" let me know - I probably will take some pictures with me in them in St John so probably will disclose my breast cancer and this blog to a more public group then.
Tuesday, July 14, 2009
Healing well and dreaming of beaches
I don't have much to report. I am actually feeling pretty good and just waiting to hear what's next. I have my tickets to St John's so going to the beach is happening, in the meantime trying to get caught up on the state of the world (bleak) and the states(even bleaker). At some point people (meaning legislators) have to realize that paying for health care will take more than a millionaire's tax - i find it ironic that the fed is acting more like states.
I am mostly off drugs and feeling okay though trying to remember to not overdo it. I have two doctor's appts on Thursday (oncologist and plastic surgeon) but I think the first appointment is mainly to check in and I want to ask her if I would be eligible for a study that has people take a drug to help strengthen bones and they are examining to check if it helps lower the probability of cancer metastasizing into the bones. (Bones are where breast cancer tends to metastasize if it is going to.) Otherwise - not sure what we are covering except to go over the biopsy results.
The other appointment is with the plastic surgeon to check on how my healing is going. I'm not a doctor but things look like they are healing well. My big question is when and if we will be expanding my expander. I'm not sure I've never spent so much time trying to figure out the right set of clothes to wear to not put too much pressure on healing areas yet try and mask the difference in size.
The question of expansion I think mainly needs to be figured out before I start radiation. Once I'm marked and they figure out angles for the radiation zapping I don't think they will expand - it seems like it would screw up the math and physics. So in some ways there is a which comes first question that needs to be answered but I think will probably need to wait until the following week when I meed with the radiation oncologist and the plastic surgeon who will be doing my reconstruction and figure out if they will expand me and then we'd start radiation. I'm hoping that we start radiation sometime early in August as I'm hoping to go to Brussels towards the end of September.
I've also joined facebook but am not totally clear how much I will be on it and how much and if I'll talk about my cancer on facebook and how much I will post there. I'm still trying to figure it out - and how many groups to join.
Other news which not sure if I've mentioned is I've started going without the wig permanently. Generally gotten good comments and in general while the DC summer has seemed pretty mild it is a lot cooler to have the short hair. I find myself watching the Colbert report and watching the progress of my hair as compared to his -(after being shorn while in a war zone). I seem to be winning.
I am mostly off drugs and feeling okay though trying to remember to not overdo it. I have two doctor's appts on Thursday (oncologist and plastic surgeon) but I think the first appointment is mainly to check in and I want to ask her if I would be eligible for a study that has people take a drug to help strengthen bones and they are examining to check if it helps lower the probability of cancer metastasizing into the bones. (Bones are where breast cancer tends to metastasize if it is going to.) Otherwise - not sure what we are covering except to go over the biopsy results.
The other appointment is with the plastic surgeon to check on how my healing is going. I'm not a doctor but things look like they are healing well. My big question is when and if we will be expanding my expander. I'm not sure I've never spent so much time trying to figure out the right set of clothes to wear to not put too much pressure on healing areas yet try and mask the difference in size.
The question of expansion I think mainly needs to be figured out before I start radiation. Once I'm marked and they figure out angles for the radiation zapping I don't think they will expand - it seems like it would screw up the math and physics. So in some ways there is a which comes first question that needs to be answered but I think will probably need to wait until the following week when I meed with the radiation oncologist and the plastic surgeon who will be doing my reconstruction and figure out if they will expand me and then we'd start radiation. I'm hoping that we start radiation sometime early in August as I'm hoping to go to Brussels towards the end of September.
I've also joined facebook but am not totally clear how much I will be on it and how much and if I'll talk about my cancer on facebook and how much I will post there. I'm still trying to figure it out - and how many groups to join.
Other news which not sure if I've mentioned is I've started going without the wig permanently. Generally gotten good comments and in general while the DC summer has seemed pretty mild it is a lot cooler to have the short hair. I find myself watching the Colbert report and watching the progress of my hair as compared to his -(after being shorn while in a war zone). I seem to be winning.
Thursday, July 9, 2009
Heading to the beach and venting just a little bit
Just booked 4 days on St. John at the pricey hotel that is pretty sparsely populated. I realize I probably have had maybe a month of time i could actually spend in pools or the ocean and am really excited about the ability to be outside, relax and possibly take a break and focus on the fish and donkeys and not what may or may not be going on in my body.
I also want to go on a soap box a little bit and encourage anyone I know who is reading this to think hard before taking flights or going on vacation or trips if it seems like you or your family members might have swine flu. I had thought this would be a no brainer for people to understand that even though you might not have serious symptoms exposing others who might be sicker than you might be worth some inconvenience or spending on your part. Then a friend of mine explained how her brother-in-law and family called to say they were postponing their visit since the kids seemed to have the flu and it might be swine flu but once the airline said it would cost a couple of hundred dollars to change the tickets they figured what the hell. That's a plane load of folks exposed and then to put a cherry on top maybe a passle of people at disneyland.
Apparently if the airline isn't willing to waive the change fees why should they feel any responsibility to not expose a plane full of people? Really, do people really think this way? It might be because I'm having a rough year, or because I've spent a week in the hospital with no effective immune system, or the thought that I may well be one of the people who could die from it, but come on. How self-centered do you have to be to not care about those less fortunate? Granted it might not be selfishness, just thoughtlessness, but in any case - shouldn't the fact that you and yours are healthy and doing well be worth saying a word of thanks and possibly postponing your trip to disneyland?
Maybe I'm excessively upset because I've had at least 3 people ask me if it is really okay for me to travel since OTHERS may have swine flu and I could catch something. Recall - I've basically been homebound and avoided crowds and many events to avoid exposure. I've been poisoned, had three surgeries and have about a two-week window to have any sort of summer-time fun. Of course, I also happily pay my taxes, give money to charity, don't need a flat screen tv and also only bought a house I could afford a 20% down-payment on.
So if things are going well for you - can you just stop and appreciate it? And, if you have to postpone your vacation to maybe keep someone else from getting even more seriously ill, just do it and be happy you can.
Of course - given who reads my blog and how terrific you have all been you really aren't the audience of folks who I think would do this. But if you're talking to people and they are wondering whether they should inconvenience themselves when it probably isn't such a big deal maybe remind them that it could be.
I'm off the soap-box and will go to bed now that I will be joining the world of people who stay awake from 8-11.
I also want to go on a soap box a little bit and encourage anyone I know who is reading this to think hard before taking flights or going on vacation or trips if it seems like you or your family members might have swine flu. I had thought this would be a no brainer for people to understand that even though you might not have serious symptoms exposing others who might be sicker than you might be worth some inconvenience or spending on your part. Then a friend of mine explained how her brother-in-law and family called to say they were postponing their visit since the kids seemed to have the flu and it might be swine flu but once the airline said it would cost a couple of hundred dollars to change the tickets they figured what the hell. That's a plane load of folks exposed and then to put a cherry on top maybe a passle of people at disneyland.
Apparently if the airline isn't willing to waive the change fees why should they feel any responsibility to not expose a plane full of people? Really, do people really think this way? It might be because I'm having a rough year, or because I've spent a week in the hospital with no effective immune system, or the thought that I may well be one of the people who could die from it, but come on. How self-centered do you have to be to not care about those less fortunate? Granted it might not be selfishness, just thoughtlessness, but in any case - shouldn't the fact that you and yours are healthy and doing well be worth saying a word of thanks and possibly postponing your trip to disneyland?
Maybe I'm excessively upset because I've had at least 3 people ask me if it is really okay for me to travel since OTHERS may have swine flu and I could catch something. Recall - I've basically been homebound and avoided crowds and many events to avoid exposure. I've been poisoned, had three surgeries and have about a two-week window to have any sort of summer-time fun. Of course, I also happily pay my taxes, give money to charity, don't need a flat screen tv and also only bought a house I could afford a 20% down-payment on.
So if things are going well for you - can you just stop and appreciate it? And, if you have to postpone your vacation to maybe keep someone else from getting even more seriously ill, just do it and be happy you can.
Of course - given who reads my blog and how terrific you have all been you really aren't the audience of folks who I think would do this. But if you're talking to people and they are wondering whether they should inconvenience themselves when it probably isn't such a big deal maybe remind them that it could be.
I'm off the soap-box and will go to bed now that I will be joining the world of people who stay awake from 8-11.
Drain's out so now all bionic parts are covered by skin
Okay - so they really aren't bionic - just artificial stuff in my body that come with little explainer cards. I'm not exactly sure what a bionic breast expander would do - but I'm thinking it could be like something out of an Austin Powers movie.
Today's visit went well - my stitches are healing well, drainage was fairly minimal so the doctor took out the drain. Super excited to not have random external tubing attached but I must admit that in some ways the most exciting part of drain removal may be that I can stop taking antibiotics.
Some of you might think between the narcotics, anti-anxiety pills, chemo drugs, steroids I wouldn't have such strong feelings about antibiotics. After all, the discovery of them has saved countless lives, and general makes people well. I'm sure they've helped me in the past but the fact that I seem to regularly have strange reactions to them that leads to quizzical/skeptical looks from medical professionals hasn't helped. And the fact that I seem to have taken more an tibiotics in the last 6 months than in the rest of my life is just sort of interesting. When running the fever most likely related to the taxol they had me on antibiotics and then when I was hospitalized for neutropenia (or a non-functional immune system) I seem to have developed my foot neuropathy after taking one of the antibiotics in the hospital and then thrush and other yeast infections.
I have been very good about taking my antibiotics, which I do understand they need to give you when you have things like drains coming out of your body but do find it incredibly strange that my reaction to said drug (Cefadroxil) was to immediately pass out and enter deep narcoleptic sleep for 2-3 hours. Interesting sleep schedule given I was taking them around 8 - to sleep that much in the morning and evening, left me often awake for that lovely 2-4 am period of time.
I read, did random number puzzles and listened to npr so did manage to avoid ordering shammies or other late night products.
You might be thinking it was the valium or percocet that knocked me out given their labels suggested this could happen, but the antibiotic knock-out happened even when I wasn't on any of the other drugs. I've also had some occasional nausea which has happened only when circumstance has made me stay awake in those post anti-biotic hours. It really was the only thing i was on this morning and there really wasn't anything to be nervous about at this appointment as compared to say Tuesday's appointment when biopsy results were given. Dr J. also commented today about how much better I've been this week at my appointments than last Thursday's and I didn't have the heart to explain it wasn't the surgery recovery but the fact that I suddenly had to function after taking the antibiotic without the benefit of my 2 hours of unconsciousness.
An additional bonus from said antibiotic has been a yeast infection but at least this time around it didn't come with thrush (knock wood) so all in all we can at least say this was a less bad antibiotic reaction than during chemo It is however strengthening my attachment to Cipro my favorite antibiotic which seems to do none of these things to my body and was what I took after surgery number 1.
In happier news both sets of surgeons seem to think my traveling at the end of the month seems totally fine. I was thinking about going to SF to see visit with friends but that might be traded in for a trip back to the Carribbean and St John. I love you guys, but last summer's trip to Caneel Bay was incredibly relaxing, beautiful and swimming with the fishes (in a good literal, non- metaphorical sense) was so great it might have to be repeated in the limited period of time when I am allowed to be exposed to both sunlight and immersed in water. Caneel Bay also has the total advantage of enough beaches (they have 7) that some are basically empty and I won't scare young children with my current rather lumpy appearance. The fish are rather forgiving of odd body shapes and, all comments about bionics aside, I in no way resemble Elizabeth Hurley or the other fembots.
I did however get to take some more naked upper torso shots. Not really sure what they do with all these pictures but I am happy not to have any tattoos or distinguishing marks which will make my shots obvious. As with my drug-taking, topless shots also seems to be an activity that seems to be occuring infinitely more frequently in my 40s than 20s.
That's all for now - I apologize to all if I have ruined the secret of the second Austin Powers movie.
Kim
Today's visit went well - my stitches are healing well, drainage was fairly minimal so the doctor took out the drain. Super excited to not have random external tubing attached but I must admit that in some ways the most exciting part of drain removal may be that I can stop taking antibiotics.
Some of you might think between the narcotics, anti-anxiety pills, chemo drugs, steroids I wouldn't have such strong feelings about antibiotics. After all, the discovery of them has saved countless lives, and general makes people well. I'm sure they've helped me in the past but the fact that I seem to regularly have strange reactions to them that leads to quizzical/skeptical looks from medical professionals hasn't helped. And the fact that I seem to have taken more an tibiotics in the last 6 months than in the rest of my life is just sort of interesting. When running the fever most likely related to the taxol they had me on antibiotics and then when I was hospitalized for neutropenia (or a non-functional immune system) I seem to have developed my foot neuropathy after taking one of the antibiotics in the hospital and then thrush and other yeast infections.
I have been very good about taking my antibiotics, which I do understand they need to give you when you have things like drains coming out of your body but do find it incredibly strange that my reaction to said drug (Cefadroxil) was to immediately pass out and enter deep narcoleptic sleep for 2-3 hours. Interesting sleep schedule given I was taking them around 8 - to sleep that much in the morning and evening, left me often awake for that lovely 2-4 am period of time.
I read, did random number puzzles and listened to npr so did manage to avoid ordering shammies or other late night products.
You might be thinking it was the valium or percocet that knocked me out given their labels suggested this could happen, but the antibiotic knock-out happened even when I wasn't on any of the other drugs. I've also had some occasional nausea which has happened only when circumstance has made me stay awake in those post anti-biotic hours. It really was the only thing i was on this morning and there really wasn't anything to be nervous about at this appointment as compared to say Tuesday's appointment when biopsy results were given. Dr J. also commented today about how much better I've been this week at my appointments than last Thursday's and I didn't have the heart to explain it wasn't the surgery recovery but the fact that I suddenly had to function after taking the antibiotic without the benefit of my 2 hours of unconsciousness.
An additional bonus from said antibiotic has been a yeast infection but at least this time around it didn't come with thrush (knock wood) so all in all we can at least say this was a less bad antibiotic reaction than during chemo It is however strengthening my attachment to Cipro my favorite antibiotic which seems to do none of these things to my body and was what I took after surgery number 1.
In happier news both sets of surgeons seem to think my traveling at the end of the month seems totally fine. I was thinking about going to SF to see visit with friends but that might be traded in for a trip back to the Carribbean and St John. I love you guys, but last summer's trip to Caneel Bay was incredibly relaxing, beautiful and swimming with the fishes (in a good literal, non- metaphorical sense) was so great it might have to be repeated in the limited period of time when I am allowed to be exposed to both sunlight and immersed in water. Caneel Bay also has the total advantage of enough beaches (they have 7) that some are basically empty and I won't scare young children with my current rather lumpy appearance. The fish are rather forgiving of odd body shapes and, all comments about bionics aside, I in no way resemble Elizabeth Hurley or the other fembots.
I did however get to take some more naked upper torso shots. Not really sure what they do with all these pictures but I am happy not to have any tattoos or distinguishing marks which will make my shots obvious. As with my drug-taking, topless shots also seems to be an activity that seems to be occuring infinitely more frequently in my 40s than 20s.
That's all for now - I apologize to all if I have ruined the secret of the second Austin Powers movie.
Kim
Tuesday, July 7, 2009
Third time's the charm
I just got back from meeting with my general surgeon and the news from the pathology report is very good. The good news is that my chest wall/muscle is clear of cancer, so that is a huge relief in terms of prognosis. There were, however, some cancer cells found in my lymphovascular system in 9 of 25 regions. So the cancer is contained and doesn't seem to have gone further but the decision to go ahead with the mastectomy instead of trying another re-excision was a good one. Other news is that my organizing biopsy cavity has exuberant foreign body giant cell reaction - which i think translates into my body kicks ass at healing (i.e., the tissue and cells were working hard to take care of the hole created by the first surgery). My stitches and skin look, good so healing is going well and things in general look good.
The meetings with the plastic surgeon also went well so people in general are happy with my healing. I'm guessing I will have the second drain removed on Thursday and it looks l like I am on track to move on to radiation beginning in August. It also seems likely that my drug taking days may be numbered. Already have permission to cut way down on the percocet and Dr. E. (the general surgeon) seemed to think I can cut back on the valium as the skin is healing well - if there was a lack of oxygen the skin would be looking black and necrotic - now it just looks a little bruised.
If I stick with starting radiation at the beginning of August, I might be able to take a trip in my future. Thinking about coming to CA, but might trade that in for a beachier/resort vacation given the surgeons seem to think I will be okay to go in water and once radiation starts - excess sunlight will be bad for me.
On other news I went into work today - sans wig and with drain. Figuring out what one wears to cover up random artificial tubes and bruising was a little interesting but seemed to work. I have dyed the gray in my hair and now need to figure out where to store Jackie and Kiki. I figure when my boss showed up for work after a week off for neck neurosurgery and on drugs the gauntlet was thrown down. Though, between the two of us, remembering details did seem a little like a bad comedy routine.
Anyway I'll be more in touch with those of you I haven't called back and in general things are going well if I'm still tired and do seem to need regular naps.
Thanks again to all of you for your good thoughts and generous gifts.
xxoo
Kim
The meetings with the plastic surgeon also went well so people in general are happy with my healing. I'm guessing I will have the second drain removed on Thursday and it looks l like I am on track to move on to radiation beginning in August. It also seems likely that my drug taking days may be numbered. Already have permission to cut way down on the percocet and Dr. E. (the general surgeon) seemed to think I can cut back on the valium as the skin is healing well - if there was a lack of oxygen the skin would be looking black and necrotic - now it just looks a little bruised.
If I stick with starting radiation at the beginning of August, I might be able to take a trip in my future. Thinking about coming to CA, but might trade that in for a beachier/resort vacation given the surgeons seem to think I will be okay to go in water and once radiation starts - excess sunlight will be bad for me.
On other news I went into work today - sans wig and with drain. Figuring out what one wears to cover up random artificial tubes and bruising was a little interesting but seemed to work. I have dyed the gray in my hair and now need to figure out where to store Jackie and Kiki. I figure when my boss showed up for work after a week off for neck neurosurgery and on drugs the gauntlet was thrown down. Though, between the two of us, remembering details did seem a little like a bad comedy routine.
Anyway I'll be more in touch with those of you I haven't called back and in general things are going well if I'm still tired and do seem to need regular naps.
Thanks again to all of you for your good thoughts and generous gifts.
xxoo
Kim
Friday, July 3, 2009
Leaving out words might be drug related
Just tried editing the last blog - sorry for the random typos and left out words - not sure what the last word was supposed to be but lets assume I want folks to be careful with fire and lit explosives.
Today was a good day - slept some more - then Melissa came over - BoSoxFox in general goes above and beyond. She stayed while i took a shower - banner achievement - and then we went out to cvs to refill the percocet prescription, walked to the new gelato place and had a good time out in the world. Taleen also spent me a spa package which i will love to use once my body seems up for pampering and more contact. Again you guys are great and I love and appreciate all you are doing for me.
Its now 5 and i am ready for bed and rest - of course it could be the valium speaking.
I'm doing well - mellow but feeling pretty good.
Kim
Today was a good day - slept some more - then Melissa came over - BoSoxFox in general goes above and beyond. She stayed while i took a shower - banner achievement - and then we went out to cvs to refill the percocet prescription, walked to the new gelato place and had a good time out in the world. Taleen also spent me a spa package which i will love to use once my body seems up for pampering and more contact. Again you guys are great and I love and appreciate all you are doing for me.
Its now 5 and i am ready for bed and rest - of course it could be the valium speaking.
I'm doing well - mellow but feeling pretty good.
Kim
Happy July 3- almost independence day
Thought I'd report in again as recovery seems to be going well. Was let out of the hospital tuesday around 4 and had a pretty good day on Wednesday. The valium/percocet combination or the fact that my arm is less uncomfortable has meant I've been sleeping more this recovery than I did after the first surgery. I still wake up but I'm sleeping more like 3-5 hours at a time rather than an hour and then waking up. Wednesday was a fine day - woke up in the morning - took my antibiotic and then slept most of the morning. In the afternoon I was up and fairly functional. Len, my boss for at least the next month came over and I even put clothes on and went for a walk with him and MaryAnn around the block. It was a little sad - with Mary Ann being the only fully functional one of our merry crew. Len had neck surgery and was wearing a neck brace, I had my lovely drains but it was a reasonably nice day and I stayed awake and alert through dinner and then basically around 8:30 or 9:00 decided i needed to retreat back into the cave i call a bedroom.
Thursday was a little rougher. Slept well and longer but didn't take pain meds regularly (took the valium at midnight and then went about 12 hours). I woke up, ate breakfast and headed back to sleep - things got a little crazy as the plastic surgery office was trying to reach me to reschedule my 4pm appointment to before noon. Unfortunately they seemed to be calling the hospital number and left a message on my cell that i didn't get until after 10:30. Suddenly i was throwing clothes on barking orders at poor Mary Ann and in the car and at g-town by 11:20. I hadn't taken much pain meds and was definitely the worse for wear from the trip.
Dr. J was happy with how things are healing, took out one of the two drains and basically told me to take the pain meds on a regular schedule for a little while. She pointed out I had had pretty major surgery and they were giving me drugs for a reason. Between rushing and probably not eating enough I was slightly nauseated and out of it for much of the rest of the day. I rallied and had some food with Sue and MaryAnn at lunch and then ate some rice and a little bit of food for dinner with Mary Ann and Melissa. Last night actually involved more reading, and less sleeping but not in a bad way. I also ate some bread and pate in the middle of the night and feel like the nausea might be behind me.
I'm now trying to be better about taking my meds - if not popping the percocet every 4 hours and valium every 6 I'm closer to that level. I finished a book yesterday - light reading but none the less reading words seems like a step up from the random soduku/ken-ken I had been doing.
I'also want to thank you all for presents this round of surgery - so far I've gotten a t-shirt - 5 books, lots of chocolate :), 3 things of flowers, an edible arrangements fruit bouquet and a basket of cheese, chocolate, fruit and other goodies. Thank you all for the presents and I am pretty set with stuff. You all are great and have made this process way easier. The loot makes having the three surgeries almost worth it. (Okay - not really but chocolate never hurt.)
Dana also needs a shout out for a trip to Target this weekend - I love my new lights even if they are targeted at college students. Not sure how I spent $250 given I was buying $20 dollar lamps but I always kind of knew that target is one of those dangerous places for me - though most things bought will be used and were good purchases and it has to be a better addiction than going to boutiques. It was also great to see Rob and Ellen last weekend and Tracy, hanging out was fun. Andy and Sue get shout outs for Sunday visits and Sue you did a fabulous job assembling said $20 lights.
Special thanks also to Mary Ann who was great to have around, providing care but also having enough other things to keep her occupied when I would retreat and in being exceedingly patient with both me and the crazy which is my mother - god bless her. Mary Ann, I hope you have a great weekend back in Boston and get to start making actual progress on putting in the pool.
I also hope all you folks in NY and Boston manage to get some sunshine. DC weather looks pretty good after seeing how grey, rainy and dismal it is in the rest of the East Coast. Sure we get some violent rain but they don't seem to last long and are kind of fun to watch, especially if you are safely inside.
This weekend goals include going out for a walk a couple of times - but no billy goat trail (yes my doctors are funny and Dr. J did in fact say this) and might try and enjoy some mellow July 4 activities - bbq or watching fireworks from a random roof top rather than heading to the Mall with the masses.
That seems about it to report - things seem to be going well. My breast area is blotchy and bumpy but will be fixed over time. Next week there are more doctor appointments - twice a week with the plastic surgery folks until the drain is out and a meeting with Dr E my surgery to hear about the biopsy results and then I will check back in with oncology and at some point figure out when radiation will start the week after.
For now I am enjoying the many books, food and pills I get to enjoy - I suppose it is a good thing to know I need encouragement to take narcotics and don't seem to be in danger of needing a trip to a Betty Ford clinic (except perhaps for the chocolate addiction).
That's all for now - time for my morning nap. At some point I will need to try and figure out the fun facts about which states have or have not passed budgets and how we can fix the economy - these issues may or may not be better dealt with on drugs - if insight hits I'll suggest valium to Arnold and the other governors.
Have fun this weekend and try not to do anything stupid with fireworks.
Thursday was a little rougher. Slept well and longer but didn't take pain meds regularly (took the valium at midnight and then went about 12 hours). I woke up, ate breakfast and headed back to sleep - things got a little crazy as the plastic surgery office was trying to reach me to reschedule my 4pm appointment to before noon. Unfortunately they seemed to be calling the hospital number and left a message on my cell that i didn't get until after 10:30. Suddenly i was throwing clothes on barking orders at poor Mary Ann and in the car and at g-town by 11:20. I hadn't taken much pain meds and was definitely the worse for wear from the trip.
Dr. J was happy with how things are healing, took out one of the two drains and basically told me to take the pain meds on a regular schedule for a little while. She pointed out I had had pretty major surgery and they were giving me drugs for a reason. Between rushing and probably not eating enough I was slightly nauseated and out of it for much of the rest of the day. I rallied and had some food with Sue and MaryAnn at lunch and then ate some rice and a little bit of food for dinner with Mary Ann and Melissa. Last night actually involved more reading, and less sleeping but not in a bad way. I also ate some bread and pate in the middle of the night and feel like the nausea might be behind me.
I'm now trying to be better about taking my meds - if not popping the percocet every 4 hours and valium every 6 I'm closer to that level. I finished a book yesterday - light reading but none the less reading words seems like a step up from the random soduku/ken-ken I had been doing.
I'also want to thank you all for presents this round of surgery - so far I've gotten a t-shirt - 5 books, lots of chocolate :), 3 things of flowers, an edible arrangements fruit bouquet and a basket of cheese, chocolate, fruit and other goodies. Thank you all for the presents and I am pretty set with stuff. You all are great and have made this process way easier. The loot makes having the three surgeries almost worth it. (Okay - not really but chocolate never hurt.)
Dana also needs a shout out for a trip to Target this weekend - I love my new lights even if they are targeted at college students. Not sure how I spent $250 given I was buying $20 dollar lamps but I always kind of knew that target is one of those dangerous places for me - though most things bought will be used and were good purchases and it has to be a better addiction than going to boutiques. It was also great to see Rob and Ellen last weekend and Tracy, hanging out was fun. Andy and Sue get shout outs for Sunday visits and Sue you did a fabulous job assembling said $20 lights.
Special thanks also to Mary Ann who was great to have around, providing care but also having enough other things to keep her occupied when I would retreat and in being exceedingly patient with both me and the crazy which is my mother - god bless her. Mary Ann, I hope you have a great weekend back in Boston and get to start making actual progress on putting in the pool.
I also hope all you folks in NY and Boston manage to get some sunshine. DC weather looks pretty good after seeing how grey, rainy and dismal it is in the rest of the East Coast. Sure we get some violent rain but they don't seem to last long and are kind of fun to watch, especially if you are safely inside.
This weekend goals include going out for a walk a couple of times - but no billy goat trail (yes my doctors are funny and Dr. J did in fact say this) and might try and enjoy some mellow July 4 activities - bbq or watching fireworks from a random roof top rather than heading to the Mall with the masses.
That seems about it to report - things seem to be going well. My breast area is blotchy and bumpy but will be fixed over time. Next week there are more doctor appointments - twice a week with the plastic surgery folks until the drain is out and a meeting with Dr E my surgery to hear about the biopsy results and then I will check back in with oncology and at some point figure out when radiation will start the week after.
For now I am enjoying the many books, food and pills I get to enjoy - I suppose it is a good thing to know I need encouragement to take narcotics and don't seem to be in danger of needing a trip to a Betty Ford clinic (except perhaps for the chocolate addiction).
That's all for now - time for my morning nap. At some point I will need to try and figure out the fun facts about which states have or have not passed budgets and how we can fix the economy - these issues may or may not be better dealt with on drugs - if insight hits I'll suggest valium to Arnold and the other governors.
Have fun this weekend and try not to do anything stupid with fireworks.
Tuesday, June 30, 2009
Drugs are my friends
Just thought i would report in. Not saying much more than Melissa did but figure would show i'm functional. I came home today about 4 - and slept about a couple hours this afternoon but not at all in the hospital last night - unless you count the total unconsciousness of surgery earlier in the day. Things went reasonably well and I will write more over the next couple of days. Now I am on a lovely combination of percocet and valium - apparently valium is really good for muscle spasms which is my main pain and a goal is to try and relax my chest muscle which is really tight. Will write more tomorrow as l should use my percocet valium drug combo to try and sleep.
Thanks again for all your good thoughts and presents, wholly unneccessary but appreciated. Mary Ann has been great and the people at G-town were terrific.
Kim
Thanks again for all your good thoughts and presents, wholly unneccessary but appreciated. Mary Ann has been great and the people at G-town were terrific.
Kim
Home sweet home!
Kim is now home. She didn't sleep much last night, so she's going to try to catch up now on sleep.
So keep those good thoughts and well wishes coming! But you may want to hold off on phone calls until later in the week.
Best,
Melissa
So keep those good thoughts and well wishes coming! But you may want to hold off on phone calls until later in the week.
Best,
Melissa
Monday, June 29, 2009
Private room
Greetings again from BoSoxFox,
I am just off the phone from Kim. She sounds great, and was pleased to report that she has a private room for the night. Unfortunately, she did not get her room until close to 9 pm. So Mary Ann had a late night at the hospital and Tracy and I were unable to visit. (Safe travels, Tracy!)
There is a possibility that Kim will stay a second night because of the late admission. Whether this happens will depend, according to Dr. J, on her pain levels and how well they are able to manage her pain with medication. Kim hopes to get home tomorrow, but we just need to wait and see what happens. She was well enough to be disappointed that the Mets' 9th inning rally fell short, so I guess that is a good sign that she is "back."
Hopefully, Kim will also return to the blogosphere tomorrow. She'll try to make phone calls tomorrow as well, but may be a bit slow because of recovery (she needs to rest and her mouth is still dry from the earlier procedures) compounded by some cellphone issues. But she is sending along her greetings.
Best to all,
Melissa
I am just off the phone from Kim. She sounds great, and was pleased to report that she has a private room for the night. Unfortunately, she did not get her room until close to 9 pm. So Mary Ann had a late night at the hospital and Tracy and I were unable to visit. (Safe travels, Tracy!)
There is a possibility that Kim will stay a second night because of the late admission. Whether this happens will depend, according to Dr. J, on her pain levels and how well they are able to manage her pain with medication. Kim hopes to get home tomorrow, but we just need to wait and see what happens. She was well enough to be disappointed that the Mets' 9th inning rally fell short, so I guess that is a good sign that she is "back."
Hopefully, Kim will also return to the blogosphere tomorrow. She'll try to make phone calls tomorrow as well, but may be a bit slow because of recovery (she needs to rest and her mouth is still dry from the earlier procedures) compounded by some cellphone issues. But she is sending along her greetings.
Best to all,
Melissa
Today's surgery, part 2
Hello again from guest blogger Melissa (BoSoxFox),
Mary Ann reports that she has just spoken to Dr. J (Kim's plastic surgeon for this part of the process). Dr. J reports that the surgery is complete, and Kim is doing well. She noted that the skin "looks good," and that is an important outcome for this part of the surgery.
It sounds as though Kim will not be out of recovery (and into her room) for at least another hour or so (7 to 7:30 East coast time). So she likely will not be communicating much with folks until tomorrow.
UPDATE: It now looks like Kim will not make it to her room until 7:45 or 8:00ish. She is sleeping well in recovery, so the nurses want her to rest as much as she can and they are integrating the shift change into her schedule. They are very pleased with her progress, and she is doing great in terms of vital signs, etc. So all good news, but communication may be slow.
Thanks,
Melissa
Mary Ann reports that she has just spoken to Dr. J (Kim's plastic surgeon for this part of the process). Dr. J reports that the surgery is complete, and Kim is doing well. She noted that the skin "looks good," and that is an important outcome for this part of the surgery.
It sounds as though Kim will not be out of recovery (and into her room) for at least another hour or so (7 to 7:30 East coast time). So she likely will not be communicating much with folks until tomorrow.
UPDATE: It now looks like Kim will not make it to her room until 7:45 or 8:00ish. She is sleeping well in recovery, so the nurses want her to rest as much as she can and they are integrating the shift change into her schedule. They are very pleased with her progress, and she is doing great in terms of vital signs, etc. So all good news, but communication may be slow.
Thanks,
Melissa
Today's surgery
Hello again to Kim's friends and family,
This is BoSoxFox (Melissa), guest blogger, reporting on Kim's surgery today.
I just spoke with Mary Ann, who has just spoken with Dr. E. The first part of Kim's surgery is now complete. Dr. E. says that everything went well, and consistent with her expectations. Kim is still in with the plastic surgeon (Dr. J.). Mary Ann will call back and report more later, when this second part of the surgery is complete, and I will post again then.
This may be an appropriate time to recognize Kim's awesome friends like Mary Ann (and Carol, Debbie, Elizabeth, Ellen and Rob, Julie, Michele, Rosanne, Sue, Susan, Taleen, and Tracy) who have done such a fabulous job keeping Kim's friends and family updated throughout the course of these treatments and procedures. It's meant a huge amount to me to get these phone calls/updates, and I imagine that many of you feel the same way. I am sure that I am forgetting people--and I haven't even started with all the Urban folks who have been providing meals, Lincoln folks who have been providing incredible care packages, friends who have been sending gorgeous flowers, driving Kim to appointments, etc. So kudos to Mary Ann and many others!
Tracy and I are making plans to visit Kim after work later today (assuming that Kim feels up to having us). I will also try to post more this evening--or perhaps tomorrow morning--after I have had a chance to speak to Kim directly and can provide more information.
More soon,
Melissa
This is BoSoxFox (Melissa), guest blogger, reporting on Kim's surgery today.
I just spoke with Mary Ann, who has just spoken with Dr. E. The first part of Kim's surgery is now complete. Dr. E. says that everything went well, and consistent with her expectations. Kim is still in with the plastic surgeon (Dr. J.). Mary Ann will call back and report more later, when this second part of the surgery is complete, and I will post again then.
This may be an appropriate time to recognize Kim's awesome friends like Mary Ann (and Carol, Debbie, Elizabeth, Ellen and Rob, Julie, Michele, Rosanne, Sue, Susan, Taleen, and Tracy) who have done such a fabulous job keeping Kim's friends and family updated throughout the course of these treatments and procedures. It's meant a huge amount to me to get these phone calls/updates, and I imagine that many of you feel the same way. I am sure that I am forgetting people--and I haven't even started with all the Urban folks who have been providing meals, Lincoln folks who have been providing incredible care packages, friends who have been sending gorgeous flowers, driving Kim to appointments, etc. So kudos to Mary Ann and many others!
Tracy and I are making plans to visit Kim after work later today (assuming that Kim feels up to having us). I will also try to post more this evening--or perhaps tomorrow morning--after I have had a chance to speak to Kim directly and can provide more information.
More soon,
Melissa
Thursday, June 25, 2009
Family time
Sorry for the delay in posting. I had been in NY visiting with my parents, sister and her family this weekend and my brother and his family have been in DC this week. Running around with kids has been fun - and uniformly the 6 and under set have been fascinated by my very short hair and wig wearing. One of my nephews is a little offended by my wearing of the wig - he thinks I'm lying to folks but it might be all a ruse so he can get his hands on it.
Last week before leaving for New York I did spend a lovely 5 hours at Georgetown for pre-surgery testing and an appointment with a radiation oncologist. Meeting with the second radiation oncologist was reassuring - according to her I'm not in a grey zone. Given the lymphovascular involvement and size of my tumor I should definitely have radiation - which means after having the mastectomy and placing of an expander on Monday the next step will definitely be radiation starting probably about a month later. While I definitely like the people at G-town I will probably have radiation at GW due to the convenience of location and the daily dosing.
While I'm sad that this process will probably go on beyond the 1 year mark I will be excited to at least have the treatment part done by that point. Reconstruction will need to be done probably a couple of months post radiation and how involved it will be will depend on what reconstruction I choose.
Anyway - next step is surgery on Monday with a stay probably overnight. I will try and post early next week . Anyway I hope your summer is more fun than mine. I did go in the pool with my nephews on Tuesday which may likely be my only pool time this summer.
Kim
Last week before leaving for New York I did spend a lovely 5 hours at Georgetown for pre-surgery testing and an appointment with a radiation oncologist. Meeting with the second radiation oncologist was reassuring - according to her I'm not in a grey zone. Given the lymphovascular involvement and size of my tumor I should definitely have radiation - which means after having the mastectomy and placing of an expander on Monday the next step will definitely be radiation starting probably about a month later. While I definitely like the people at G-town I will probably have radiation at GW due to the convenience of location and the daily dosing.
While I'm sad that this process will probably go on beyond the 1 year mark I will be excited to at least have the treatment part done by that point. Reconstruction will need to be done probably a couple of months post radiation and how involved it will be will depend on what reconstruction I choose.
Anyway - next step is surgery on Monday with a stay probably overnight. I will try and post early next week . Anyway I hope your summer is more fun than mine. I did go in the pool with my nephews on Tuesday which may likely be my only pool time this summer.
Kim
Tuesday, June 16, 2009
Female doctors rock!!!
I've been meaning to blog and report in after meeting with the new plastic surgeon on Monday. She seems awesome. She seems super competent and the meeting went well after a bit of a rocky start. Tracy came with me and while I did almost lose it when the front office staff wanted me to re-fill out the 3 pages of forms it got better from there. When I explained that I had been there Friday and was seeing Dr. J because the other surgeon's schedule was too full they said they would go retrieve my record. I'm guessing the fact that Michele had called basically all of the assistants and schedulers of the random plastic surgeons Friday afternoon probably tipped them off. Again the doctor and the nurse I met with were terrific. I also got to pose in the studio for some more topless/headless pictures. On Friday the doctor just took the pictures, Monday they took me into a lit studio where apparently the person in the office who takes photos works.
She also took the whole process VERY seriously, and clearly doesn't like the idea that the other plastic surgeon just snaps away in the examining room.
MaryAnn is going to come on Monday, apparently I get 2 drains for this surgery - though one is little and is supposed to come out on Thursday. I will stay overnight and then probably go home but the doctor seemed to think I would be okay on my own for the following weekend.
I also spoke to my oncologist, who was also super supportive and who I am seeing post-mastectomy. She also really likes the G-town radiation oncologist who I am currently scheduled to see on Thursday - though it might make sense to postpone that appointment until after surgery when they can get more biopsy results. She (the oncologist) thought I was on the margin between getting radiation and not and thought it wasn't a terrible idea. (There is some evidence of radiation decreasing the probability of recurrence even with mastectomy for tumors of the size mine was.) She did repeat that I do not need more chemo - and I am happy to keep any forward progress I can.
Basically I am in a way better space now mentally - part of this process that is kind of amazing is how long ago things can feel. It feels like way longer than Friday when I met with the doctors.
This weekend I am going to NY to see my parents and sister and family and then my brother and his family come to DC on Tuesday.
She also took the whole process VERY seriously, and clearly doesn't like the idea that the other plastic surgeon just snaps away in the examining room.
MaryAnn is going to come on Monday, apparently I get 2 drains for this surgery - though one is little and is supposed to come out on Thursday. I will stay overnight and then probably go home but the doctor seemed to think I would be okay on my own for the following weekend.
I also spoke to my oncologist, who was also super supportive and who I am seeing post-mastectomy. She also really likes the G-town radiation oncologist who I am currently scheduled to see on Thursday - though it might make sense to postpone that appointment until after surgery when they can get more biopsy results. She (the oncologist) thought I was on the margin between getting radiation and not and thought it wasn't a terrible idea. (There is some evidence of radiation decreasing the probability of recurrence even with mastectomy for tumors of the size mine was.) She did repeat that I do not need more chemo - and I am happy to keep any forward progress I can.
Basically I am in a way better space now mentally - part of this process that is kind of amazing is how long ago things can feel. It feels like way longer than Friday when I met with the doctors.
This weekend I am going to NY to see my parents and sister and family and then my brother and his family come to DC on Tuesday.
Saturday, June 13, 2009
Things do look better in the morning
I never did buy the ice-cream yesterday. But after watching a good trippy movie (Across the Universe - Julie Taymour directed, beatles music inspired trip through the 60s), and sleeping and getting out today things seem okay. I went for a walk on the C&O canal, went to a farmer's market and having lunch with my friend Sue I am feeling better. I seem to generally basically only wallow for a day or night and then seem okay with the new information.
Today seems like an okay day as long as the 30 or so people congregating in my neighbor's apartment for the gay pride parade don't drive me too crazy. Sue dropped me off at 3 and besides for the 20something blonde guy smoking and reeking of alcohol by 3 - it was okay that he kept waving but when he wanted a hug I had to draw the line. I would have thought my age, gender and saying I had surgery on my left side so didn't want contact would have done it. He seemed to want details and I said I had surgery on my arm but didn't really want to ruin his mood or discuss my breast cancer with him. I'm trying to remember if I've ever been that drunk at 3pm even when I was 20-something. Maybe when I lived in London during college but I don't even think then .
In the end I'm guessing it's going to come down to how good the concrete walls really are - of course I never heard the twins from upstairs so I'm hopeful I won't be too disturbed. It might be sad that I have gotten old and crotchety.
I will probably see another radiation oncologist to get a sense or consensus on the need for radiation - though I'm guessing I am at a point where going for more agressive treatment seems prudent. I will also figure out what I think of the new plastic surgeon after monday's appointment and figure out how long recovery usually is. I think my friend Mary Ann is going to come stay :).
I'm going to try to stay more active - and just take this one day at a time. (How many cliche's can I put in one sentence.) This also probably means a trip to Westchester to see my folks if I don't have them come post-surgery. I love them but not sure my apartment works for three people - I could maybe have my mom sleep on the futon but I don't think they wouldn't kill each other if they were both on the futon and after my surgery I'm not going to want to be on the futon.
Ir will work out in the end. I might go buy frozen yogurt now.
Happy pride for those celebrating - I will try not to be too cranky, even if the carousing does keep me up :).
Today seems like an okay day as long as the 30 or so people congregating in my neighbor's apartment for the gay pride parade don't drive me too crazy. Sue dropped me off at 3 and besides for the 20something blonde guy smoking and reeking of alcohol by 3 - it was okay that he kept waving but when he wanted a hug I had to draw the line. I would have thought my age, gender and saying I had surgery on my left side so didn't want contact would have done it. He seemed to want details and I said I had surgery on my arm but didn't really want to ruin his mood or discuss my breast cancer with him. I'm trying to remember if I've ever been that drunk at 3pm even when I was 20-something. Maybe when I lived in London during college but I don't even think then .
In the end I'm guessing it's going to come down to how good the concrete walls really are - of course I never heard the twins from upstairs so I'm hopeful I won't be too disturbed. It might be sad that I have gotten old and crotchety.
I will probably see another radiation oncologist to get a sense or consensus on the need for radiation - though I'm guessing I am at a point where going for more agressive treatment seems prudent. I will also figure out what I think of the new plastic surgeon after monday's appointment and figure out how long recovery usually is. I think my friend Mary Ann is going to come stay :).
I'm going to try to stay more active - and just take this one day at a time. (How many cliche's can I put in one sentence.) This also probably means a trip to Westchester to see my folks if I don't have them come post-surgery. I love them but not sure my apartment works for three people - I could maybe have my mom sleep on the futon but I don't think they wouldn't kill each other if they were both on the futon and after my surgery I'm not going to want to be on the futon.
Ir will work out in the end. I might go buy frozen yogurt now.
Happy pride for those celebrating - I will try not to be too cranky, even if the carousing does keep me up :).
Friday, June 12, 2009
Visit with surgeons.
Thought I'd check in though my news is kind of frustrating. I met with the plastic surgeon and team who thought I might need radiation so thought best option for surgery would be to do the mastectomy and put in an expander and do reconstruction (either tissue transfer or implant) after I am done with radiation if I need it. I was bummed this process would be more drawn out but after talking to the radiation oncologist I had thought I would probably need radiation too.
We (BoSoxFox, my steadfast companion) then went to see my general surgeon - while Dr. E was a little surprised about the concurrence about doing radiation she was happy to defer to the experts. We then tried scheduling surgery which the fancy plastic surgeon couldn't do until July 16, even though it would only be 45 minutes of his time since we were only doing the expander surgery and 2 hours earlier they seemed to think they could get it scheduled fairly quickly. This is the point where I basically lost it. After much finagling by Dr. E's assistant I am going to have surgery June 29 with a different plastic surgeon who is interning with the the microsurgery guys putting in the expander. This new doctor is a certified plastic surgeon and my doctor thinks she will do a good job and that I could still have the reconstruction afterward.
I'm not sure why the idea of having surgery on June 29 seems much more doable than mid-July but it seems dealable given I want the cancer out of my body. My sugeon pointed out most of the tumor is gone, so that is good news even though the stuff that's left seems more hardy. So more surgery, then radiation then some decisions about reconstruction but the cancer will be out of my body. I'm trying to figure out if I am being totally irrational and foolish in not waiting the extra 2 1/2 weeks to have the surgery with the more experienced surgeon. If I balk after meeting with the new plastic surgeon on monday I can see about rethinking this whole process.
My surgeon also gave me the option of having the mastectomy and then having the expanders put in later but having another surgery also seems like too much - given the 2 I've already had.
The other thing I'm trying to work out today/tonight is what recovery will look like and what I need to do in terms of having people stay and for how long. My parents are supposed to be going back to Vegas from NY on that day and logistically I'm not sure it would work to have them come up straight from NY.
I'll figure this out this weekend and Monday. Will try and write more or expand this over the weekend.
Kim
We (BoSoxFox, my steadfast companion) then went to see my general surgeon - while Dr. E was a little surprised about the concurrence about doing radiation she was happy to defer to the experts. We then tried scheduling surgery which the fancy plastic surgeon couldn't do until July 16, even though it would only be 45 minutes of his time since we were only doing the expander surgery and 2 hours earlier they seemed to think they could get it scheduled fairly quickly. This is the point where I basically lost it. After much finagling by Dr. E's assistant I am going to have surgery June 29 with a different plastic surgeon who is interning with the the microsurgery guys putting in the expander. This new doctor is a certified plastic surgeon and my doctor thinks she will do a good job and that I could still have the reconstruction afterward.
I'm not sure why the idea of having surgery on June 29 seems much more doable than mid-July but it seems dealable given I want the cancer out of my body. My sugeon pointed out most of the tumor is gone, so that is good news even though the stuff that's left seems more hardy. So more surgery, then radiation then some decisions about reconstruction but the cancer will be out of my body. I'm trying to figure out if I am being totally irrational and foolish in not waiting the extra 2 1/2 weeks to have the surgery with the more experienced surgeon. If I balk after meeting with the new plastic surgeon on monday I can see about rethinking this whole process.
My surgeon also gave me the option of having the mastectomy and then having the expanders put in later but having another surgery also seems like too much - given the 2 I've already had.
The other thing I'm trying to work out today/tonight is what recovery will look like and what I need to do in terms of having people stay and for how long. My parents are supposed to be going back to Vegas from NY on that day and logistically I'm not sure it would work to have them come up straight from NY.
I'll figure this out this weekend and Monday. Will try and write more or expand this over the weekend.
Kim
Saturday, June 6, 2009
Back from Cambridge and still waiting to see the plastic surgeon
(Note lots of random discussion of reconstruction - so if flesh talk makes you squeamish be forewarned.)
Just thought I would check in, though no real news to report. Cambridge was fun and it was great seeing old friends (friends that I've had for 20+ years - none of us are old despite that math, we were apparently toddlers in college) over the weekend and then some newer friends at the conference Sunday-Tuesday. The Harvard undergrads turned out to be safe and the most reckless thing I did was buy 4 pairs of shoes and assorted other clothing with Pam and Taleen. A little retail therapy did me good as did the re-introduction of alcohol back into my life. I'm sticking to one maybe 2 drinks and trying to make them weak. (Yes I had three mojitos yesterday but they were largely mixed with extra sprite and ice and I did have the bartender add more vodka to my orange juice Monday night in Cambridge.) I'm guessing the drinking multiple nights in a row is also not a habit I will keep up but seemed to work this past week. (I didn't drink Wednesday or Thursday.)
Cambridge was beautiful, the conference was interesting though I apparently can handle going to about 3/4's of a day long conference. This was true this past week and at the NTA meetings the week before.
Tracy was a champ at presenting our synthesis non-paper and I basically asked and answered questions. It was interesting being with other people who care about what's happening to locl governments. I may have to apologize to some folks who during the cocktail hours and breaks may have thought they would be coming and having lovely conversations about local finances and what people were working on and ended up finding themselves faced with boob talk. A number of folks at the conference are people I know pretty well and have been following my progress throughout the year. In general, public finance/tax folks are very nice and have been super supportive. But it has in the end meant I've ended up talking about my breasts with way more men than I'd ever have thought. Of course they maybe should just be relieved that I'm not stripping down and showing them my scars, something I've mainly done with women.
Coming back to DC was fine though it has been rainy and dreary. I'm doing okay and while the weekend break was welcome I'm a little sad i passed up the Monday morning meeting with the plastic surgeon - as I am still waiting to see him on Friday.
In the meantime I've started reading about reconstruction. I think I'm leaning towards the free flap surgery - which entails moving flesh, fat and skin but not muscle from the stomach or butt to form a new breast and then reattaching to the blood supply. Upside, it is my own body, doesn't require moving my muscle (tram flaps and other earlier surgeries include moving and using ab or back muscles), and looks more natural(then implants) and if everything goes right, I have a minor second surgery to create a nipple and then I'm done. Down side long (possibly 11 hours) surgery, month-long recovery time (longer than implant recovery) due to 2 incision sites and higher potential for the surgery not to be successful and the flesh could die.
Implant surgery requires putting in a chest expander (unlike cosmetic surgery it goes behind the chest muscle as the skin needs a source of nourishment and the breast flesh is gone) which is partly filled with saline and you need to come in a couple of times for more expansion and then have the final surgery. Downside of implants - will look much more different than other side (implants stay round and perky) , feel less natural and likely will need to be replaced at some point and might require doing something on the other side for symmetry. Upside surgery is quicker, and more surgeons can do this.
Tram flap (the other surgery type using your own body) requires using muscle can take as much time as free flap but it is less tricky since not detaching and reattaching veins and arteries but does involve moving a muscle. Given my back issues I'm not sure I'm ready to use lower ab or back muscles.
I think assuming the plastic surgeon says i am a good candidate I would go for the free flap if we can do it pretty soon. If they don't think this could be done I might go with the implant and potential surgery on the other breast to even things out. The idea of using my muscles kind of freak me out.
I'm having random dreams about not being to have the surgery right away and the cancer remaining in my body is freaking me out. I want this to be over and I'd also hate to have to start recovery all over. My arm and breast are still hurting now - if I'm totally recovered and need to start over I'll be somewhat bummed.
I have names of women who have gone through this decision making process and will begin having discussions. Most of the people I know have had double mastectomy reconstruction - I'm not sure if the considerations are all the same given the symmetry issues don't come into play for them.
Otherwise, things are okay. I'm hoping that things will be somewhat resolved on Friday. I might see about scheduling an appointment with another plastic surgeon for this week to try and have more options.
In other minor news -my hair is coming back (i have even started shaving my legs) and have lost one of my big toe nails - the other one is bound to come off soon as well. They've both been pretty dead since taxol times and have been the other body part I've been somewhat obsessing about. (Of course if we tally it up, most of my body is getting a certain amount of attention - checking on hair, wanting my arm to be less sore and start working, my breast needs to stop aching and the toe-nails. I also need new glasses/contacts but figure that can wait for next flex-period.)
Hope you are all having a good day and best wishes for those participating in the random race for the cure races throughout the country.
Kim
Just thought I would check in, though no real news to report. Cambridge was fun and it was great seeing old friends (friends that I've had for 20+ years - none of us are old despite that math, we were apparently toddlers in college) over the weekend and then some newer friends at the conference Sunday-Tuesday. The Harvard undergrads turned out to be safe and the most reckless thing I did was buy 4 pairs of shoes and assorted other clothing with Pam and Taleen. A little retail therapy did me good as did the re-introduction of alcohol back into my life. I'm sticking to one maybe 2 drinks and trying to make them weak. (Yes I had three mojitos yesterday but they were largely mixed with extra sprite and ice and I did have the bartender add more vodka to my orange juice Monday night in Cambridge.) I'm guessing the drinking multiple nights in a row is also not a habit I will keep up but seemed to work this past week. (I didn't drink Wednesday or Thursday.)
Cambridge was beautiful, the conference was interesting though I apparently can handle going to about 3/4's of a day long conference. This was true this past week and at the NTA meetings the week before.
Tracy was a champ at presenting our synthesis non-paper and I basically asked and answered questions. It was interesting being with other people who care about what's happening to locl governments. I may have to apologize to some folks who during the cocktail hours and breaks may have thought they would be coming and having lovely conversations about local finances and what people were working on and ended up finding themselves faced with boob talk. A number of folks at the conference are people I know pretty well and have been following my progress throughout the year. In general, public finance/tax folks are very nice and have been super supportive. But it has in the end meant I've ended up talking about my breasts with way more men than I'd ever have thought. Of course they maybe should just be relieved that I'm not stripping down and showing them my scars, something I've mainly done with women.
Coming back to DC was fine though it has been rainy and dreary. I'm doing okay and while the weekend break was welcome I'm a little sad i passed up the Monday morning meeting with the plastic surgeon - as I am still waiting to see him on Friday.
In the meantime I've started reading about reconstruction. I think I'm leaning towards the free flap surgery - which entails moving flesh, fat and skin but not muscle from the stomach or butt to form a new breast and then reattaching to the blood supply. Upside, it is my own body, doesn't require moving my muscle (tram flaps and other earlier surgeries include moving and using ab or back muscles), and looks more natural(then implants) and if everything goes right, I have a minor second surgery to create a nipple and then I'm done. Down side long (possibly 11 hours) surgery, month-long recovery time (longer than implant recovery) due to 2 incision sites and higher potential for the surgery not to be successful and the flesh could die.
Implant surgery requires putting in a chest expander (unlike cosmetic surgery it goes behind the chest muscle as the skin needs a source of nourishment and the breast flesh is gone) which is partly filled with saline and you need to come in a couple of times for more expansion and then have the final surgery. Downside of implants - will look much more different than other side (implants stay round and perky) , feel less natural and likely will need to be replaced at some point and might require doing something on the other side for symmetry. Upside surgery is quicker, and more surgeons can do this.
Tram flap (the other surgery type using your own body) requires using muscle can take as much time as free flap but it is less tricky since not detaching and reattaching veins and arteries but does involve moving a muscle. Given my back issues I'm not sure I'm ready to use lower ab or back muscles.
I think assuming the plastic surgeon says i am a good candidate I would go for the free flap if we can do it pretty soon. If they don't think this could be done I might go with the implant and potential surgery on the other breast to even things out. The idea of using my muscles kind of freak me out.
I'm having random dreams about not being to have the surgery right away and the cancer remaining in my body is freaking me out. I want this to be over and I'd also hate to have to start recovery all over. My arm and breast are still hurting now - if I'm totally recovered and need to start over I'll be somewhat bummed.
I have names of women who have gone through this decision making process and will begin having discussions. Most of the people I know have had double mastectomy reconstruction - I'm not sure if the considerations are all the same given the symmetry issues don't come into play for them.
Otherwise, things are okay. I'm hoping that things will be somewhat resolved on Friday. I might see about scheduling an appointment with another plastic surgeon for this week to try and have more options.
In other minor news -my hair is coming back (i have even started shaving my legs) and have lost one of my big toe nails - the other one is bound to come off soon as well. They've both been pretty dead since taxol times and have been the other body part I've been somewhat obsessing about. (Of course if we tally it up, most of my body is getting a certain amount of attention - checking on hair, wanting my arm to be less sore and start working, my breast needs to stop aching and the toe-nails. I also need new glasses/contacts but figure that can wait for next flex-period.)
Hope you are all having a good day and best wishes for those participating in the random race for the cure races throughout the country.
Kim
Friday, May 29, 2009
More surgery for me
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
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
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