Hair Today....

Well today my CBC showed an "appropriately lowered" white count, and my hair is starting to shed more than usual -- though no obvious bald spots have appeared yet. I was a bit worried when I showered at the high school pool after swimming today that I would scare the other swimmers by losing half my hair and would have to reassure them that it was expected.... Luckily there wasn't anyone else in the showers when I shampooed my hair -- except my mom.

Mom came yesterday! She came to help -- I was hoping to reassure her with how ME I still am. And now I'm hoping that some of the time we will have a good time (we have so far!) and she will rediscover swimming. (She taught me, long ago. I think she's going to discover that she's stronger now than she thinks.) She helps even when she doesn't notice -- today Emily hung out with her after school while I was busy, and Em seemed much happier for it.

Today was a great day except that I'm up too late again. So I'm off to bed! (The times this blog says seem to be Pacific time or something.... it's a few minutes after midnight.)

adustment

I would say that this week has been the hardest one for me, i dont know why it just was, i have had a couple bad days just randomly about the whole thing. There were a couple of times i just burst into tears and cryed for a while, the whole time when i am accually thinking about what is going on i realize that i shouldn't be worried because my mom is in good hands ( even if we do have to wait like 1 and a half hours to have my moms blood drawn and talk to the doctor) in a sceduald appointment. ( dont bother about the spelling)

All in all i have had a pretty bad week exept i am really happy about all the offers to help us out, it means alot to me

(please let me know what you think about all of this!)

Energy!

Yesterday was my first reliably well day since the chemo last Thursday. (I know I posted that I was feeling better on Monday afternoon, but Tuesday am was another story.) I don't know if I'm better because it's just been enough days since the chemo, or if it has something todo with taking the anti nausea med at night, even though I'm not nauseous then. I started doing that Tuesday night (hoping it would help) because waking up nauseous just messes up the day.... can't get my energy up if I can't eat, and then what can I do?

Yesterday I went on a bikeride with the Babes. It was great but they got worried and sent me back early with an escort! I was fine though, and would have ridden harder and faster. Tomorrow I'm going to do the whole ride -- and it's going to be a pretty one! I hope the bike cooperates.... it complained a little about gear changes.

Now if I can stomach the chlorine smell I will go swimming. (smell never bothered my stomach before!) If I can't (or if Pinky guilt trips me) I will go for a long dog walk instead. Course I always get sleepy around when the pool opens.... in about 5 minutes! :-D

Feeling Better!

Around midday today I turned a corner. It was almost in time to swim..... it was in time to walk but it was raining buckets. (Pinky won't come out when it's raining. She thinks she's a cat.) It was still good though -- I was hungry!

I got my bike back from Jonathan (world's best bike mechanic) even though it's only good for a couple of weeks. He says it needs an overhaul -- I'm planning to get it to him JUST before my next treatment. I'm going to be ready to bike by the time it stops raining now..... which looks like Wednesday. I hope this treatment regimen works because it seems like it might be doable.... (I don't feel the tumor shrinking yet..... pity if it doesn't. But it's only been 4.5 days so far.)

I have to remember that how I feel isn't exactly an indication of how well the treatment is working ... it's just recuperation from the meds. Still it feels like a kind of victory to be out from under the cycle of nausea/ dizziness & sleepiness caused by the nausea medication. I feel like I'm not quite myself without my energy. Maybe even more than without my hair! Course I don't know about that yet.....hair's still here.

OH here, I have a question. My friend Cara who cuts my hair offered to cut it short for me when she comes over to style my wig (probably wednesday. And no I don't know how much I will use the wig -- maybe just for work so i don't scare the small children.... maybe not even then.) Her thinking is that if I have a short haircut it will be less of a shock when it all falls out. I'm undecided about whether to take her up on it. My instinct is to keep my hair long and wild for as long as possible.... but on the other hand she's really good with hair and this would be a chance to try something new that I might not usually have the guts to try..... So -- who knows what I will do, but I'd love to hear opinions!

New oncologist

For some time we'd been trying to see an oncologist at the Lombardi Center at Georgetown University Hospital. One oncologist in particular there had come very highly recommended from multiple independent sources, and another one looked very good as well. Before going to the Mayo, we were looking at Lombardi as a possible local version of a place like the Mayo or Johns Hopkins. But we were unable to get an appointment. Even though the recommendation Nadine received at the Mayo was not terribly different from what our first oncologist back home had recommended, we still thought it would be good to check out Lombardi - because it seemed to us that the doctors there might be a little more plugged in to the latest developments, and because we also need to think about long-term care (that's long term, as in decades!).

Thanks to the efforts of several people (to whom we are very grateful), we were finally able to get an appointment this Wednesday morning, the day before Nadine was scheduled to begin chemo. It paid off.

We were able to see the second of the two oncologists I mentioned, and just as with the surgeon we met with at Mayo, I would say that Nadine left with a very good feeling about her. My own opinion is that what sealed if for Nadine was when the doctor described how she would actively follow the effects of the chemo to see if the tumor was responding, and would tailor the approach accordingly. Most likely, Nadine will continue to have the chemo largely as already planned, but if for some reason a modification is advisable, the doctor would discuss this with us rather than just sticking to the standard approach regardless of how well or poorly it is working. That kind of hands on approach that takes into account what is actually happening for the individual patient is exactly what Nadine was looking for, and what she most likely would not have gotten if she'd stayed with our original oncologist. It's not so much that the first oncologist wasn't good - she was very nice and seemed very competent. It's that she seemed more rigid in her approach (and if you know Nadine, you know that just the mention of rigid will turn her off, even if in the end you do exactly what you had planned all along) and that when you find someone who resonates with what you want, and when they are in a good institution to boot, that's hard to top. It was the same with the local surgeon, someone Nadine has really good feelings about (after all, he's the one who found the cancer in the first place, and he was very proactive about it), but nonetheless will not be using. So, it's surgery at the Mayo, chemo and other local care at Lombardi.

For me it was important that the Lombardi oncologist was upfront about the fact that the adriamycin might well not have a dramatic effect given the nature of Nadine’s cancer. This was something that I already knew, but she talked about it even before I asked. She feels it is very important that her patients know what is and is not known, and that they not go in thinking they are getting a magic bullet. I appreciate that, and felt assured that we were dealing with a good doctor here. I think it was also reassuring to Nadine, because it gave her confidence that the doctor knew here stuff, was honest, and would work with us (and also because it was in this context that she talked about tailoring the therapy).

The Lombardi doctor did want to make one change to the chemo plan - to change from doing adriamycin every two weeks to doing it every three. The former is the current standard approach, and was recommended by both our original oncologist and the Mayo oncologist. However, the Lombardi doctor said that the pathology indicates that Nadine likely has a somewhat slower growing tumor, so that any potential benefits of the two week cycle revealed in large studies probably would not be apply in her case. She also said that the one study that really looked at this question did so in the context of also using a taxol, which she thought (based on a fairly large body of literature) was probably the real reason why the two-week cycle was better. Having looked into the literature pretty extensively by now, I see that it supports what she said (there is actually a second study, using epirubicin instead of adriamycin (both are "anthracyclines"), but it was also done in the presence of a taxane). There is nothing (that I can find at least) which would argue against her recommendation. So, Nadine has decided to go with the three week cycle.

She is also suggesting that we might change the approach to the taxane, which Nadine will be getting after she finishes with the adriamycin/cytoxan. She suggests that weekly taxol rather than biweekly taxol will likely work better. That was something I had only just became aware of, because a large study on the question was published just 8 days ago in the New England Journal of Medicine. It verifies what she is saying. Upon further research I found that there was a smaller study published a couple of years ago which came to the same conclusion. Obviously this is a doctor who has her ear to the ground and really does know the latest developments.

Next, it turns out the the Lombardi doctor is acquainted with Nadine’s ophthalmologist. This will only help when it comes time to do steroids (with the taxol), which might negatively affect Nadine's glaucoma. Whether we will do taxol, or a variant know as abraxane which requires a lower dose of steroids (this was suggested by the Mayo oncologist) has not yet been determined. The Lombardi doctor didn’t reject it, but nor did she embrace it, because there is much less experience with abraxane for use in pre-operative chemotherapy if the cancer has not spread beyond the local lymph nodes. However, she will be looking into it, and we have a few weeks to figure this one out.

Finally, we got a hard copy of the pathology report from the breast biopsy done at Mayo. Tissue was sample from two different location. In one location the cells were grade 1 and in another were grade 2 (on a three point scale). Grade 1 is the best prognostically, and we are very happy with this finding, as before we thought Nadine had a grade 2/3 cancer.

So, all in all, Wednesday was a good day.

change

As soon as i heard that my mom had cancer i was nervous that everything would change, and everything did change. it is only the second week of my mom's Kimo and i already feel like nothing is the same. to make everything worse my mom gets all the attention which i am definately not used to, and my friends get to like go shopping with their parents and i have to stay home doing other unimportant . well this is only the second day and i already feel terrible. YAY a whole more year of misery;..( i feel like hiding in a shell and never coming out

1st chemo treatment

I had my first chemo treatment yesterday. It went well. I did have a moment during the cytoxan drip when it didn't feel right....it got swimmy around my eyes. They slowed the drip and it got better. Then I started worrying about the time..... I had a 12:30 job. I didn't want to cancel because it was my last time with this family and therapist, because the therapist got a new job, and I know they all like me and that there have always been complaints about the interpreter when I have had to cancel. I did make it, but I was 10 mins late.

I called ahead -- my agency knows what's going on and I had no complaints. I was a little sleepy at the job (that happens sometimes pre-chemo anyway.... happens to me on all slow moving jobs.) After that I came home & walked the dog to pick up Emily. After I came home I was tired -- and after I lay down I started to feel nauseous. I took an antinausea medication, but it really took until 6pm to work -- an hour and a half after I took it. After that I went to sleep..... and slept and slept. (I did get up for a midnight snack and to say hi to Matthew.) This morning I slept instead of going on the bikeride, like a lazy teenager.

I did walk the dog 4 miles...... and I have another convenient excuse for not having biked...... the bike was doing that thing again (on Tuesday when I last rode it) where it complained when I was in most gears.... other that the one IT wanted me to be in. So it's at the bike doctor's today.

:-D