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Saturday, April 19, 2008

Home Again!

Got home late last night, starving -- but instead of being completely uninspired about what to eat I found this great big box of salmon and sardines (!!!) waiting for me. Thank you Lenny & Janet!!! (As of this writing I have devoured a can of each.....) Then today ..... I've been tired ..... and I haven't even started on chemo yet! We did have to get up early every day in Minnesota, and didn't usually get to bed when we should have.

Yesterday we saw the "alternative therapies" doctor. (This was amazing because he was booked up until June. I don't know how we got lucky -- I jsut asked. They did everything I asked over there...... they were just great.) I thought he would know about herbs. He actually was down on supplements -- he said they would feed the tumor also and I should stop them. (Course by that logic I should starve myself, like Max Gerson said.) I have to figure out which ones to stop and which to stick with..... There are some herbs I have just started taking -- which are supposed to help stay tumor growth, strengthen the liver, build the blood. (Maybe I should wait on that last one til closer to the surgery or at least til I see whether my iron levels are going down with the chemo.) I was getting ready to check out herbs that strengthen the heart..... I guess I had still better look for that.

Basically the alternative therapies guy was all about meditation, and calm, lessening anxiety, and sleeping more. Oh and massage -- but I have to find that here. (Any leads?) The anxiety is hard... they took good enough care of me at the Mayo that they have quelled most of my anxiety about the cancer. Now as long as I have a good plan with a good local oncologist (to be firmed up next week) I will be able to relax about that, once I've started -- I think. BUt the daily anxiety about getting the kids where they want to go and up and to bed and stuff...... and not meeting their needs..... that's hard!

Thursday, April 17, 2008

The medical report

Today Nadine had a core biopsy performed - the pathology report on that will be in late tomorrow or early next week. We haven't yet seen the pathology report on the slides we brought from Virginia, but we should have that by tomorrow also.

That said, everyone here seems to feel that the cancer is stage IIB/IIIA (I think they are leaning now more towards IIIA) and a bit more aggressive than the doctors in VA said - even though, as far as we know, this conclusion is based only on their reading of the pathology report submitted by the VA pathologist. We'll see what the Mayo report says.

After all of the discussions with the various doctors (the internist, the breast surgeon, the medical oncologist (who gave us a second short visit to answer some additional questions we submitted to him today), a GYN oncologist/surgeon, various nurses, and I'm sure I'm forgetting somebody) Nadine is feeling pretty sure about how she wants to proceed:

4 cycles of adriamycin/cytoxan (AC) - the biggest concern has been about the cardiotoxicity of the adriamycin. We've gone over this extensively with the oncologist and explored many various alternatives (including ones we've come up with ourselves). Nadine feels decisive that, in spite of the risk, AC is the best course of action.
4 cycles of abraxane - this will replace the original recommendation of taxol. It should enable Nadine to avoid the use of steroids (or at least minimize their use), which are bad for her eyes given her glaucoma. The oncologist has used this in the past and feels it is just as good as taxol.

4 weeks (probably) of rest/recovery

Surgery - Nadine really hit it off with the surgeon, Dr. Boughey. If there was a surgeon who could be the opposite than the one we saw at Johns Hopkins, this is the one. As much as Nadine likes the surgeon in VA who removed the lymph node, she wants Dr. Boughey to do her surgery - so we will be coming back here for that.

Some period (4 weeks?) of rest/recovery

Radiation - this is the one area we haven't really explored yet. Since the radiation has to happen 5 days a week, we will have to do this in VA. So we will need to make decisions about where to do this, and what radiation oncologist to use. But there is time to do this, and I'm sure we'll consult with Mayo as well when we come back for the surgery.

The chemo will be done in VA. We will likely stick with Nadine's current oncologist if she will concur with Nadine's decision on the chemo (she had originally recommended 4 cycles of AC followed by surgery followed by taxol, so we have two relatively minor changes that she needs to consider: doing all chemo before surgery, and changing taxol to abraxane). But we may still be able to get an appointment with one of the doctors at the Lombardi Center at Georgetown. We are considering what to do here. Since the recomendations on chemo have been largely similar everywhere, we may be fine sticking with the current oncologist. The benefit of Lombardi is that they may be more plugged into the very latest information - but I have the sense that the oncologist here is similarly plugged in, and he is the one who has helped Nadine come up with the chemo approach. Still, since we need to be thinking long-term as well as short-term, we might still want to do Lombardi.

We did have one real scare today, related to the visit by the GYN oncologist/surgeon. We thought he was seeing us to discuss the possibility of removing Nadine's ovaries as an approach to preventing recurrence, which would be recommended if she tests BRCA positive. But in fact, when the medical oncologist looked at the CT/PET scan yesterday, he saw what he called "some soft tissue mass in the pelvis" - probably the uterus, that could be nothing, could be fibroids, or could be something more serious. No note had been made of this by the VA radiologist (whether because they missed it, or because they concluded it was nothing to be concerned about, we don't know). So he wanted the GYN specialist to see Nadine. The GYN specialist reviewed the CT/PET himself, then came in, asked Nadine a bunch of questions, gave her an exam, and concluded that she is fine. What was seen in the CT/PET was entirely consistent with the fact that she is 44 and had carried two children to term. Basically, the uterus was slightly enlarged and, as he described it, a small portion at t! he top had folded over on itself so that in the scan it looked sort of thickened (if I have that right). But it was fine. I have to say that both Nadine and I were very concerned, and then very relieved!

Tomorrow we will see the genetic counselor, and then Nadine will be participated in a clinical trial of a new imaging technique (she was not eligible for the other two trials that really interested her). And then we'll be coming home, a day earlier than planned.

wigs and scarves!

Okay, enough heavy medical news. I did a fun thing today too. There's a place that does wigs and scarves that offers new Mayo cancer patients a free wig. I don't know that I will want a wig, or that I would find one I'd like..... I really like my own personal hair -- but see that is not going to be a choice this summer.

Well they were really helpful....and really nice. This woman helped me find a wig in back that worked better than the ones out front, which looked a good bit like my hair! (It looked more like my mom on top..... but they said it can be styled. I am going to see if my hairstylist friend Cara would be willing to play with it.....:-)

Then I saw the scarves. Oh boy were they pretty. Well maybe just one, I thought. The woman showed me how to tie them on. They were really reasonably priced -- she said it's because they are a service, not making money. In the end I got three scarves and a hat -- and then she remembered about the sleep caps.

Sleep caps? WHo needs a sleep cap, I thought... and then I remembered about the AC in the house in the DC summers. My hair is really warm and protective..... I'm lucky to be going through chemo now rather than in the winter! So I tried on the caps. The one I liked best was pretty thin, and the wonderful woman found me a better one. (She let me keep the one I liked, too -- the sleep cap was another freebie like the wig.) Finally she got me some wig shampoo and conditioner. See these wigs are synthetic, and you can't use regular hair products on them or they get glopped up. (I will have to tell Em about that.)

They offer a makeup class too, but only once a month -- the only thing I was thinking of learning how to do was draw eyebrows on. (I hear they will fall off with the hair.) The woman showed me the basic idea -- I will be able to get any dark brown makeup pencil and..... I don't know if I'll be able to do a good job drawing in eyebrows, but I have this great 10 yr old daughter who has a lot more practice with makeup than I do. (Cousin Lois gave her tons of Avon Lady samples a few years ago and for a long time she had makeover playdates.....)

The Mayo Clinic

Decided to keep the appointment at the Mayo. We flew out to Minnesota on Tuesday pm, leaving our kids behind for the first time.... it was wierd. Emily gave me one of her favorite stuffed animals for the trip (Soapy, a pocket sized black bear.)

OH and I had some great news just before we left town -- my PET/CT scan was negative! No metastases were seen in other organs -- phew! Makes this thing seem a lot more beatable. It's pretty big as it is.....

Anyway yesterday was our first full day here. It was really packed -- and yet the only hard time was at the beginning, because of the low blood sugar. They had sent me a letter telling me to fast starting at 7pm the night before -- not even water -- and had scheduled me to see the doctor at 8am, do some other stuff, and have my blood drawn at 10:30am. But it was too long for me -- especially since I had really been fasting since 6pm; we had to get to the airport after that (and of course I had been late to finish packing so I hadn't been able to eat a whole lot at dinnertime.) I would have said I didn't really eat breakfast much, but apparently that's really different than eating NOTHING....My sense of humor was gone by the time I got to the desk.... Iwas afraid I wouldn't be able to pay attention to the doctor. So they sent me to do the bloodwork lickety split and pointed me to the cafeteria ... and after a plate of eggs and potatoes (it was the potatoes that did it!) I was myself again.

We met the primary care doctor first. She coordinates my care. We saw the surgeon next, which was a surprise. (They had scheduled one for Monday, two days after we need to be back home....) The surgeon herself was great. She's young and sharp and bright -- I could ask her 4 things in a row, all complicated discission starters, and when she'd finish answering the first 2 and I'd have forgotten the rest, and she'd answer them. She was sure and firm and up front about her opinions.... I can't express what it was about her, but I just wanted to say yes, do it. You will be great. Fortunately I happened to have my detail oriented biologist handy (EVERYONE should have one of these while going through breast cancer treatment planning!) and he remembered to ask her where she'd trained and how many breast surgeries she performed every year, how many years, and how many with lymph nodes...... She passed both of our tests with flying colors, and didn't seemthe least bit offended.

We also saw a medical oncologist who worked with us going through all kinds of possible alternatives to the standard treatment..... Adriamycin, one of the first chemo drugs I'm going to be on, has an effect on the heart I don't like..... In the end I am going to take it, because there is no other drug that has proven as effective, and if I don't get the cancer cured I won't have to worry about not recovering as well from a heart attack in later years.... and it won't be for the reason I want! I will be able to change the taxol for abraxane, though, i think -- they are basically the same drug in different solutions -- but the difference will make the steroid unneccessary which is usually administered with taxol .

Steroids raise intra-ocular pressure, and the only other serious condition I have is glaucoma. I've had it half my life, and it's very well controlled, but before it was discovered I had already lost most of my overlapping vision.... my buffer, if you will. (There's a lot that you can see with both eyes at the same time -- try looking at a fixed point with one eye closed and then the other. The upper range of what you can see with both eyes is what I've lost. I can still see almost everything, as long as I keep both my eyes open.....There is a gap in the mid-upper section, so that I might walk into a skinny tree branch that had no leaves if I was looking down.... ) Anyway there is really no wiggle room now -- I am very careful about my eye pressure. I'm lucky there is an alternative that doesn't need steroids.

I have been told my blogs are long.... so I will stop here. I have some fun news though -- see next blog!

Monday, April 14, 2008

Johns Hopkins

I had high hopes for Johns Hopkins, and the guy told us some useful stuff -- like we need to get the breast biopsied, because the cancer might look different there than it did in the lymph node ....and he said that the disruption of the node removal surgery I have already had made some tests not useful anymore.... Also he thought it was silly to split up the chemo -- and we should jsut do chemo-surgery or surgery-chemo. (He thought chemo first.) After that there will also be radiation and hormone therapy. But he couldn't answer any questions we had about the specific chemo drugs because he's a surgical oncologist -- not a medical oncologist. And when I asked about seeing the medical oncologist he said we'd have to make an appointment and come back.

When I expressed dismay at this situation (I mean Baltimore is not halfway around the country, but it's not a nice bike ride, either) and my prior understanding that we were getting a team approach, and would have been scheduled to see both doctors when we made the initial appt, -- he suggested i go to Georgetown, make an appt with their oncology team -- and told me about some great people there.

So we left, having been basically dismissed, and called Georgetown. Well their oncology "team" is booking appointments starting in September..... They then passed my call to oncology -- which doesn't have that team approach -- and we left a message. It was the 4th message in the last ..... since late last week. We've never been called back.

Then when we got home there was a letter from the Mayo about our appt on Wednesday, which I had been hoping to be able to cancel by now (having found great coordinated care locally). telling us who we would be seeing (a medical AND a surgical oncologist) and told us to bring all tests and reports, and warned that they might do some over. They included a comprehensive list of things to bring (bottles of herbs and medications, for example.) It's a pity to have to get on a plane to find a place where we will (it appears) be taken care of in a coordinated way, but the fragmented care I was seeing here is driving me nuts!

Except at the Virginia Hospital Center -- a mile away. They've been great. For anything less than stage 2-3 breast cancer I would be happy to stay there. I am hoping to do most of my chemo there, though I think the Mayo will get me started.

And also -- I did make an appointment for tomorrow with a highly recommended oncologist (medical) but then when I mentioned him to Kathy she asked what hospital he's affiliated with and i said Sibley -- and she'd never heard of it. COurse it's not Georgetown. I've heard that people in the area are going to be somwehat competitive with each other -- so the surgeon he chooses might be great because they need to compete with georgetown surgeons. They would do some care coordination..... maybe it would work out and be great.....

... but we're going to the Mayo. We could still go see the guy tomorrow and then go to the Mayo and decide whether to stay there or not. (We'd have to pay out of pocket for the consultation with the guy tomorrow -- insurance won't pay for more than one 2nd opinion. I'm hoping to explain to insurance that the guy we saw today was surgical only.)

I don't know...... Partly we're going to the Mayo because they are offering us what we can't seem to get here -- this other guy might be offering it, but it's been too many disappointments already. I thought of trying to put it off but Kathy and Ted are here now, and won't be, next week. They can stay with the kids and help with their routine -- school and sports and stuff....

ANyway. I need to go type up a list of things for kathy & ted about the kids. And get to bed early.... and pack. I will try to make time for a bikeride tomorrow I think. I will post from MN if I manage to wrest control of the laptop from the boy. (He will NOT be pleased!!)

Sunday, April 13, 2008

Kathy and Ted are coming

The hard thing this week has been fitting in anything normal like cooking, shopping, and hanging out with the kids. I have chemo scheduled to start next week but we may also go with John's Hopkins instead -- that appt is also next week. It's still possible I'll have the surgery first -- but I think probably not. Sooooo.... my in laws are on their way. They will be here a week...... hopefully after that we will have made a decision as to care and the kids will be a bit more self sufficient. My mother in law is much better than we are at teaching kids to fish rather than just giving them the fish......

Meanwhile I have a PET/CT scan early tomorrow -- that's to check & see if the cancer is anyplace else in my body. I feel like I want to ask for prayers or something ("or something" is more my style) but in fact the cancer is where it is, as Alan said last night, and I want it found. I just don't want it to be anywhere else. (On the other hand if anyone knows any tumor shrinking prayers... those I would love to have.)

I won't know til Wednesday though, and in the meatime we go to John's Hopkins on Monday -- after the scan -- and have to make a decision about whether to keep the appt at the Mayo on Wednesday before we know if the cancer is stage 3 or 4. (It's 3, not 2, according to the info Lynn sent -- THANK YOU LYNN!!!) Alan thinks 3A. The oncologist was calling it "localized advanced," seems to be another way to say stage 3.

Meanwhile I'm tired already, and haven't even started the chemo. Tired on a weekend! That's so unusual, but I think I know why. I'm sleeping better now, but I have cut a few things from my diet..... Alan started looking up herbs and supplements after i was diagnosed, and found questions about some of them. So -- while I will never know what caused the cancer, I need to do what I can to avoid helping it grow..... and I need to remember that it feels bigger now because I have ovulated, and it always feels bigger after I ovulate.

See I've been feeling this "tumor" for a long time. I thought it was a fibrocyst. It IS a fibrocyst -- the cancer got all mixed up in a fibrocyst...... at this point it's like the cancer ATE the fibrocyst. It always hurts at this time of month. I hope it doesn't really grow every month with ovulation, but I do hear it feeds on estrogen. Some cancer patients have their ovaries out...... (now why does the idea of that bother me more than the mastectomy?)

Anyway my theory about being tired is that I stopped drinking Yerba Mate. I'd been drinking it for years, every morning. It's great. I didn't realize it had a wake up effect til Phil told me.... because it doesn't KEEP you up, either. But it does kinda clean out the cobwebs from the corners of my mind.... wel it did. But Alan found it seems to be linked to some kinds of cancer -- not breast, but not a good idea anyway.

I'm going to be making some changes to my diet. I'm going to be even harder to feed now. I haven't quite figured it out yet myself -- I've dropped a little weight.

My kids are acting out. Think they're maybe feeling a little neglected? I'm so glad Kathy and Ted are coming! The best day Em's had since my diagnosis was the day Vickie took her out for the afternoon. For Matthew I am very thankful to the Washington-Lee High JV baseball team, where he spends every afternoon after school until 6:30 (when there's no game -- much later when there's a game) and every saturday 10-12:30 -- or more if there's a game. He loves baseball.

Thank you everybody for everything you are doing. I'm going to go finish breakfast now so I'm ready to go for a walk when Joan gets here.