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Thursday, November 20, 2008

First Carboplatin-Taxotere chemo

It went fine. I biked there AND back, 26 miles on fat tires. (It's the same building as my glaucoma doctor, and I have finally gotten a clear idea of how many miles it is, because Joan came, and she has an odometer on her hybrid -- I don't have one of my mountain bike....) I didn't know how it would be, but the nurse heard what chemo meds I had taken before and predicted that this would be the easiest of the three. Wow! They did give me antinausea premeds -- and either they work great or I wasn't going to get nauseous.... I got hungry on the way home and told Joan I hadn't brought a big enough lunch -- and came home and ate a big dinner, which is unusual for me.

Yeah I know -- just watch the steroids bulk me up. I am starting at 115, so 120 would be fine. We will see what happens -- my chemo buddies from G-town gained lots more than that and it's winter..... I will just have to see if I can keep biking; that's important for my sanity and sleep and the sanity of my family...... :-D

then I got home and thought, hmm, maybe body aches. But then I realized I was feeling my surgery site, which is still kind of tender, especially where the numbness is thawing out.

Alan was very sweet and took the day off, and came to chemo (my idea since he seemed to nervous about my having a reaction and their ability to handle it. He got to see that these nurses looked like they knew what they were doing -- as did Joan and I.) Then he scooted as soon as he'd seen me get the first 15 mins of taxotere (the last drug they gave me) and ascertained that I was not having an allergic reaction -- and got home in time to meet EMily after school. I got home just in time to change and pick up Matthew at school after his debate meeting.

And now I'm going to go have a little rest. And maybe a hot bath....... and lie with Emily, if she likes. (another rest. That will take care of both evening eyedrops.) :-)

OH I almost forgot. When I was talking with Em last night, we talked about what carboplatin sounded like it should be, since it doesn't really sound like a medication. She thought it sounded like a credit card. I think it sounds like the next generation of fancy bikeframes. I told her she just has to play the dictionary game....... Hmmm, I need to talk to some friends about finding time for a game night soon......

Wednesday, November 19, 2008

Chemo Tomorrow -- taxotere & carboplatin

I swam a whole mile on Tuesday with my right arm doing strokes the regular way! I had planned to do it for jsut a little while, but it felt so right, like something had gotten fixed.... that I did the whole mile with my arm coming out of the water like it's supposed to.

And my mastectomy scar looks great. (I put vitamin E oil on it a lot.) I don't mind being lopsided - and it's not exactly that I'm not vain; I just really don't think it looks that bad.

So now that I'm feeling well I'm going to start more chemo tomorrow. It was a tough decision, and the irony is that the person who probably helped me make it the most was the oncologist at Georgetown who won't do it. (Go figure.) She called last night and we talked for a good hour.

Anyway this stuff won't be a walk in the park -- Alan has been checking up on it and has found a lot of blood toxic side effects. I'll get neulasta after every dose, to boost my white count, even though they are 3 weeks apart. Nothing to be done about the platelets, though. I wish I knew what to eat or something to boost them.... if anyone knows, please do tell! (Red count goes down too -- I'll eat venison. I'll see if they are okay with my taking nettles which also boosts iron -- but not like venison!) Also I'll have to take steroids AND it might make me nauseous. Last time I slept a lot from the antinausea meds while on AC, and then I was more awake after the steroids from taxol. this time I'll need both, so what will that be like? Alan thinks I should not bike the week that the platelets are at their nadir (low point.) But I don't know; the other stuff wasn't a walk in the park either, but I was okay after one low weekend, each time. SO we will see......

I'm thinking that it will be harder to avoid germs now than it was in the summertime. I made a soup this evening with lots of seaweed in it, to feed the thymus, which I hear helps avoid change of season respiratory infections. The only problem was, the kids weren't really into it. ALan will eat it some and I will mostly eat it -- but the idea was to try to keep the germs out of the house. Of course ALan and Em are already coughing and snuffling. (I have a tickle, too.... I will tell the doc.) Matthew doesn't sleep much during the week -- I think what's saved him so far is he keeps his distance from us most of the time! though he does hang out with me late at night if I'm up. So if the steroids keep me up..... I know, it's a really bad example. It's also quite nice.....

And on that note I should head up to bed. But first -- I have to tell one more little story. After I went swimming on Tuesday I was telling a woman in the locker room (who I know but don't see all that often) how proud I was of having been able to do the whole mile 3 weeks after surgery, my third time swimming, and that I was actually swimming the regular way already (regular out-of-the water strokes with my right arm, which I hadn't planned to do yet!) ANyway the woman looked down and said, "Gee, I don't see a scar." Now... granted, I hadn't taken my bathing suit off yet, or it would have been obvious, but one side was still clearly flat..... and bathing suits aren't baggy or anything....

Isn't it amazing what the brain will edit in when it expects something? If this gets out the plastic surgeons will all be out of work -- and even the people who make the prostheses!

Monday, November 17, 2008

Taxotere & Carboplatin, or Xeloda with Radiation?

The good news is, I found a doctor willing to prescribe and give me the chemotherapy that my Mayo onc recommended. He called the doctor at Mayo and spoke with him while I was in his office (and ascertained that the recommended therapy is taxotere with carboplatin, not taxol.) The twist is, he also had another thing to offer, which is this drug Xeloda taken with radiation. It enhances the effect of radiation. This didn't impress me at first, because I know radiation to be a local therapy only.

However, he said that radiation has systemic effects. It helps prevent not only recurrences but also metastases. They don't know why, but it has been proven via clinical trials. Interesting, isn't it? The thing is, I can't have both. I'm not sure why not.

He also said that he recommended tamoxifen be taken after radiation rather than with it, because in the lab it weakens the effect of radiation. ALSO he said that he wouldn't worry about the delay in starting tamoxifen for chemo, as long as I start it within say 8 months of my initial diagnosis. When we left his office ALan did some calculations and saw that in fact I would not be able to start tamoxifen until close to a year after my initial diagnosis, if I pursue this additional chemo. And if I don't..... if I do Xeloda plus radiation, I will make it. (I think he must know I wouldn't make it with the chemo, though. I will run this by him -- or the Mayo onc.)

Finally...... I made a chemo appointment for THursday. I have to confirm it tomorrow, or cancel or change it, because that's when they order the meds, 2 days ahead of time. I have three conflicting appointments on THursday so I have to cancel two tomorrow. It's a given that I will have to cancel the dental.... unfortunately there won't be time for me to have my teeth cleaned (unless I can squeeeze it in tomorrow -- and the hygentist can also squeeze me in) until after this new chemo -- if I take it. The other appointment is with Dr. Liu, who hasn't returned any of my emails or called me back since my appointment a week and a half ago. I would like to hear her take on the Xeloda with radiation question, but I would have to change my chemo appointment in order to see her.

I could change it til MOnday -- but then I'll lose the rest of next week and the option of biking (every time I take it -- one week per month.) This stuff will make me sick like the first 4 treatments, and Thursdays worked well for that because I got to recover on the weekends, with interesting kids around to entertain me and sometimes friends to help.) If I change it til a bit later in the day then I will have to make an arrangement for EMily for after school. I can do that.... but I just did it today, because Dr. Smith only sees new patients between noon and 2pm, and his open slot today was at 1.

Anyway those are the questions I have to ponder tonight. Of course I'm sleepy and want a nap -- or an early bedtime - instead. I'll lie with Emily when she's ready and do my eyedrops. I always like to get in a nap that way -- but she's getting so much older, she often keeps me up!

If anyone has any words of wisdom -- I'll take them!

:-D

Friday, November 14, 2008

2nd swim & chemo group get-togeter!

I did bike 42 miles on Wednesday, but you know what I realized? That sounds impressive to lots of you guys who aren't bikers -- but in fact biking is absolutely the kindest of my exercises to the site of my surgery. I mean, I hold my arm steady the whole time -- absolutely NO rotation or range of motion necessary. It's easier than walking the dog.

It's a good thing I got all those miles in on Wed because yesterday I didn't even get to bike to G-town and back, since it was raining-- and not warm and rainy like it was in the summer. (Then I biked anyway. Not yesterday.) Then after I saw the surgeon and got my medical records to bring to the doctor I have an appt with on Monday, I went up to the chemo floor to see Bonnie (who was having herceptin) and Barb, who was having -- today I think she was having herceptin and abraxane. (She alternates formulas -- and I think she has to tell them when she makes her appointments which combo it will be for that day.) ANyway I spent so much time with Bonnie and Barb that I had to rush to beat Emily home after school. (I had meant to pick her up.....)

Then today the ride was cancelled (wet & drizzly) so I walked Pinky 4 miles and swam 3/4 mile, as per the recovery instructions for my 2nd swim.

Next time I should be able to do a whole mile. However, because it hurt so much after the first time (only half a mile, last Monday) I swam differently this time. Most of the time I swam with my left arm coming all the way out as usual and my right arm doing the same motion but staying under the water – it was like a funny looking modified crawl. I realized that usually my right arm extends further than my left, because I turn left and breathe on the left, always – as I was taught to, in the 70s. (Now kids are taught to breathe on both sides.) I did pull my right arm out sometimes and do the stroke as it is usually done, so I know I can – but I did this mostly when I was close to done so that I’d get the whole 3/4 mies in w/o my pec seizing up this time. I want to work up to doing regular out-of-the-water strokes for the whole mile gradually. My thinking is, if I do it with my arm underwater a lot now, I seem to be able to swim a good distance now, and get a real workout, while still working up to being able to do it the usual way.

So far it seems to be working -- it's been almost 8 hours since I swam and I feel all right this time -- so far.

The other cool thing is, my chemo group is getting together tomorrow afternoon, for the first time without chemo! I had thought i'd have to miss the get together -- Matthew has a debate tournament and I'm a volunteer judge. Generally the school has to provide 1 judge per 4 students who will be competing. I was afraid Matthew would not be able to compete if I didn't judge tomorrow -- in which case Iwould have gone and judged and missed getting together with my friends. However, the debate coach found someone else instead of me -- I'm a little worried that I worried him, though. (I was tired when I wrote that email -- and I'm tired now. I might not have been all that tired at the debate, though...... though we do have to get up and out in the dark, and this way I'll be able to come home and get back in bed afterwards.....Thing is, it's not really because of chemo or surgery that i would want to -- it's really just because it's going to be a saturday morning at like 7am.

Monday, November 10, 2008

Swimming

Well I finally went swimming, on Sunday. The nurse practitioner who removed my 2nd drain, on Friday afternoon, said that it was okay to swim after 48 hrs. She also said to swim half what I usually swim the first time, 3/4 the 2nd time, and to leave at least a day in between the first two times. I usually swim a mile, so that's pretty clear and simple to figure out.

Of course I was planning to be in better shape than she thought, because I always figure I'm in better shape than they think. SO I got to the pool, got my suit on (looked a little funny on the flat right boob, but of course no one's really paying attention) and got into the water. It took me a quarter mile of alternating breast stroke lengths with semi crawl lengths* to get my right arm extended up to a reasonable crawl stroke, but I did it, and was pleased to have done it on my first day out. (* The semi-crawl started out as a nice crawl stroke with my left arm and little baby duck flap with my right.....) I was thinking that I'd do 3/4 mile rather than a half, because the first quarter was so wussy...... but just as I was finishing the last lap of the half mile my right pec clenched, as thought it suddenly noticed it was all alone out there without its breast! So I caved, and got out after having swum exactly the amount that the nurse practitioner had said and no more -- and made sure to take a 4-5 mile walk later with Pinky and a friend.

SO it was with some surprise that I discovered later that evening that something over near my right armpit was extremely sore -- I had to take a pain killer in the night! It hurt today, biking to my eye doctor with a backpack on -- but biking with backpack hadn't hurt any of the times when I'd gone to Georgetown last week, so I think I am still sore from that half mile swim.

I had been planning to do my 2nd swim tomorrow, the 3/4 mile -- but I'll find some other exercise instead if I'm still hurting this much in the morning.

Saturday, November 8, 2008

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.

Thursday, November 6, 2008

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.