Expectations

I discovered something. When I go around with only one boob and no prosthesis, nobody notices. I mean, I went to the infusion unit at Georgetown on Thursday to see a friend and a lot of the nurses said hi and asked how I was doing. I told them I'd had my mastectomy and that i wasn't wearing a prostheses -- I mean I did everything but pull up my shirt and still they were surprised. They got it, finally, with a jolt!

I think when people are expecting to see two boobs they mostly see two boobs. Maybe if I walk by a construction site or some other place where guys are actually particularly checking out women's boobs, maaaaaaybe....... but I will probably have to go do it to decide.

This discovery that people see what they expect sounds kinda familiar -- I think maybe this is one of those things I rediscover every couple of years. And not only me -- there's a lyric from a Simon and Garfunkle song I've always liked that goes "a man sees what he wants to see and disregards the rest." That's not exactly the same but it's pretty close.

Doctor Visit Today

My doctor really thinks more chemo is a bad idea. She won't prescribe it. However she then backed off a bit and said she'd talk to my mayo onc -- because though what he offers me is a gut, I want to have the benefit of his gut, you know? She doesn't want me stuck in the middle, which I appreciate, and if I decide I really want the stuff she says she's sure there are people in the area who would do it and that she will help me find one. So my job remains, to investigate it thoroughly and see what I want to do. The points she brought up is that the additional chemo is risky. Neutropenia I bet I can defeat (low white count -- sometimes febrile -- sometmes puts people in the hospital. My doc says she's had people die of it -- but I'm sure I wouldn't be one of them.) The other is leukemia, probably from the meds used to counteract the risk of neutropenia. That's a longer term risk. So the thing is if the anti cancer meds cause other cancers -- the risks need to be weighed. Also she thinks that slower growing hormone positive cancers often don't respond that great to chemo, and respond better to endocrine therapy, which would be delayed for this experiment with chemo.

So ..... while I prefer to make the choice myself, she IS looking out for me. And it is true what she says that "the chances are I've licked this thing." In other words, chances are better than 50% I won't have a recurrence or metastases. Not much better, but better. WHich means that the OTHER doctor's point is also well taken that there is a high risk that I will have a metastasis. Tough choice. I mean I'd love to be done with chemo, but only if it's the best thing to do.

Meanwhile in smaller news I have to keep the drain in at least one more day. I'm also leading the bikeride tomorrow -- which is perhaps the only activity that really gets my wiggles out without rubbing against the darned drain -- so that's good. It will be my first official babe ride, and longest, since the surgery. (I've biked to G-town and back twice -- that's 24 miles total, in 4 trips of 6, on fat tires. Tomorrow it's 32 on the fast bike, hopefully returning with warm bread in my backpack.)

After my visit to the doctors this AM i went up to see Barb. YOu'd think she'd be lonely but I think she's had people there every week so far since our chemos were done ...... Nancy got there before me today, in a sassy red wig! I will post some pix of them sometime -- though I didn't have my camara today, so no red wig pix -- yet. Speaking for myself, I don't visit Barb because I think she needs company -- but so I can have hers! She's a lot of things, but her positivity is the most surprising, because it shows up about the most unlikely things. I thought I was positive, but Barbara is truly the sunny side queen.

drain, biking, and tumor response/ plan detail

Okay so now I've had my mastectomy and I'm healing well -- I have one drain left in still and cleared for biking -- which I would have done today had the ride not been canceled. I napped, but only because there was no ride --then I walked Pinky 4 miles, and I did fine. SOmetimes I even held her with my right hand. I just had to hold her so that if she pulled I pulled back rather than having my arm yanked out of its socket right at the surgery site. She's pretty predictable, so I could do it. (Joan's stronger, but Pinky took Joan by surprise a lot last weekend -- that's harder to do to me, since I've been with her for 2 years.)

Anyway the tumor response to the chemo was mixed. I went through this two posts ago, but this is more detailed. One tumor shrank from 6 to 3 cm, and then half of the 3cm was still alive. The other tumor, which was a little under 2cm to start with, didn't respond much to the chemo at all. That's okay if that's all there was -- and the good thing is, the smaller tumor had cells that were grade 1 (the closest to normal. Grades are 1-3.) The larger tumor had grade 2 cells. It is possible that the larger tumor responded better to chemo because chemo targets rapidly growing cells (like hair! and red and white blood cells) and the smaller tumor didn't grow that fast. That should be hopeful, right? (I do hear about lots of people with much smaller breast cancers than mine which are much more aggressive. They respond better to chemo but there is always the worry that they might come back because if they do they will grow fast.)

ANyway the worry about the live tumor left, which responded only partially -- and the other one which didn't respond much at all, is that if they sent tentacles out into the rest of my body it's a bit scary, because maybe those micro tumors are still there. (They didn't show up on the pre-chemo scan.) SO my mayo onc suggests more chemo, a combo of taxol, which I just took in 12 weekly (small) doses, and carboplatin, in 4 big doses, starting in 2 weeks, 3 weeks apart. Pluses will be unknown, since there's no tumor left by which to measure its progress. Insurance should pay, because it's an approved therapy for other cancers (lung, ovarian, and metastatic breast cancer.) Mine's not metastatic -- the point is to nip it in the bud, because it's at high risk of that happening. The minuses are, it delays the radiation (not a problem according to the rad onc at the Mayo because the closest margin was 2mm) and the tamoxifen, which is the hormone therapy. That should be okay as long as I keep having hot flashes (I ought to be able to manage that for two more weeks.... and after that the chemo ought to keep them I would think) and keep avoiding soy and beef...... I'm not worried about side effects -- I mean I won't enjoy them, but I should be able to handle them; I've handled this whole chemo thing pretty well I think. ALan does have one more scientific worry about what if there are cancer cells in my body which partially respond but which learn how to fight off the chemo..... There is no way of knowing and I still think that the plusses of whopping them in the ass NOW have to be worth the risk.

NO, I think the hardest part will be, will my G-town onc go for it or will I have to get on a plane every time I want to get the darned chemo and get it in minnesota......? I will try to think positive, since I'm seeing her in the morning. She's a good onc, but I'm afraid she will see the question in terms of which is safer for HER, and that is going to come up on the side of the tried and true therapy. WHich is better for ME is a more interesting question -- really hard to know the answer to. I hope she will help me with it. Alan thinks I should go in with that question on the table, assuming that it is my choice (as it should be) and jsut ask her help with it. I will try to do that; it's a good approach, I think. Then if she actually says she will not prescribe it I will ask her to please reconsider as I am seriously considering doing it.....

Meanwhile I signed up to lead the bike ride on Friday -- and tomorrow I'll bike to Georgetown. OH and the surgeon was right about the fevers I think -- they never returned. Obviously biking cures more ailments than they think. (Do I hear breast cancer??) :-D

Course my drain's not cooperating with my appointment schedule. Drain #2 is supposed to come out tomorrow. Well it put out under 30ccs on Monday and will do that again today, easily, but YESterday it put out 40. I'm supposed to have it pulled if it puts out under 30 for 2 consecutive days..... I called to change my surgical appt to Friday afternoon (Alan's here so it's okay about the kids) but no one answered -- all afternoon! My appt is tomorrow at 9am, so I just have to go to it and ask, and probably have hustled for nothing and have to make another appointment for Friday afternoon. I will let her pull it if she thinks the extra it put out might have had something to do with drain #1 having been pulled that day -- she had said that it might put out less, and the site where drain #1 was pulled from might leak a lot. Well it didn't leak at all, and drain #2 put out more that day. I am sure she will know if this is a common thing that is about the removed drain.....

It was wierd that I couldn't reach anyone about the surgical question -- or even get a voicemail! When I met her (yesterday) the surgeon had bristled at the fact that I'd had my surgery done out of state by a non famous surgeon. But see, the Mayo would never just not be available like that -- there would always be a way to find them. And there was no pre-surgery sedative needed at the mayo, either ..... they are just that nice, and warm -- and they come hang out with the patients before surgery -- I bet the patients are all relaxed! I know I was, and that's not something I do from the inside out, but with help from others. Hard to explain that I went for the whole place rather than for one particular person........

1 drain down, 1 left

Probably she could have taken both, but you never know, so I'll go back on Thursday to have the other one out. She said there was no sign of infection and guessed that my fevers might be from stuff in my lungs leftover from anesthesia. She said I was probably not clearing them completely.

Funny thing is, I woke stronger today (despite a fever) and decided to bike -- which turns out to be just what the doctor ordered! She said to get back to my regular exercise routine. She said no reason not to bike with the Babes now if I feel up to it and swimming I should be able to do a couple of days after the last drain is removed. (That should happen on Thursday, so Saturday.)

She asked about my range of motion, which isn't bad. I can't reach the right arm straight up, but I'm just leaning about a foot. It might not impact swimming too much -- I'll see. They made a PT appt for me -- the first available, on 11/17.

The surgeon also pointed out that it's time for me to get a mammogram now, on my left breast. I was thinking I should have it in 6 months, but in fact during these past 6 months (since my last mammo) I've been dealing with the OTHER breast. And she looked at my mammos, because I voiced a clear lack of confidence in the use of mammograms in general.

That was interesting. She said they were good mammograms, and that she could see the cancer clearly on the "clean" mammo I had last March. She showed it to me and said "LOok, can't you see it?" The two tumors were lit up. She showed it to me on the previous mammogram too (2006) but said that it was easy to see in that one mostly in retrospect, because she knew exactly where to look for the cancer, from the later mammos.

So while she didn't exactly SAY that the Arlington Hospital people screwed up......

Meanwhile I'm trying not to peek at the election returns. I voted 2 weeks early in case of surgical complications. (Even minor complications, had they kept me at the Mayo, would have had me in the wrong STATE -- and here I am in a swing state this time!!!) I am sad that Obama's grandma missed this day.

Challenges

I've been having fevers for the last 24 hrs. Very low fevers, 100° tops, with chills and body aches like the flu. My flu shot was last Wednesday in the hospital, so it's too late for that to be the cause. I called my Mayo team last night, but since the surgical and drain sites look fine my surgeon's resident said it can't be anything serious. I wonder if I've managed to finally catch something from one of the kids. They really don't have much going on, though, and I managed to catch nothing from them for the 6 months I was on chemo..... so I wonder if maybe it's some infection in the drains.

That makes me a bit nervous, but I'm going in tomorrow because to have one of them removed. Drain #1 has been putting out less than 30 ccs for 3 days now, and I'm supposed to have it removed after it's done that for 2. My "real" appt. is Thursday. I will change it unless drain #2's output goes down tomorrow. (That one's been putting out closer to 45ccs. That's the lymph drain.) ANyway I will tell the doctor about the fevers and see if I can get some antibiotics -- or what she thinks of how it all looks. This is a new doctor for me, a surgeon at G-town who agreed to do follow up care for my Mayo surgery so I could come home. (It looks mostly fine, but there ARE these wierd symptoms....)

I was feeling so much better -- went for a 4 m walk with Joan yesterday -- but these new symptoms are a setback; now I've been mostly sleeping. (Good thing ALan's taking most of the week off.)

The other challenge is my Mayo Oncologist's recommendation. I haven't had the energy to write about this here before, but now I will try. My pathology findings were that the tumor had shrunk to half its original size, and the remaining tumor was almost 50% dead, and over 50% live tumor. So my Onc said that I have a choice, go forward with tamoxifen and radiation (which at the Mayo are done together ROUTINELY, btw) and keep our fingers crossed, or do 4 more rounds of chemo first.

He recommends taxol and carboplatin. That combo is approved for use with metastatic cancer and lung cancer and ONE other thing -- so there will be no problem with insurance, he says. However, we won't be able to measure how well it's working, because my breast tumor is gone -- so it's possible that we will be just losing time. However, the taxol worked -- albeit slowly -- and I have no reason to think it was done working. And the fact that it works with metastatic cancer is actually good -- because the POINT is to kill any micro tumors that might not have gotten killed during the course of the chemo.....

The challenge is, will my G-town oncologist go for it? And if she doesn't, what will I do then? Getting on a plane to go to Mayo 4 times to get the chemo seems a bit much....