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.

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.

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.

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.

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.

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

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

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.)

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.

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.