Chest Throb @ T-giving

I got this weird symptom yesterday -- it started around the time we were eating dinner I think. My chest throbbed -- on both sides, like a band across my chest -- I would say about three big beats, every time I got up, once when I sat on the toilet, and once when I drank a glass of water! Before I went to sleep when it had still not resolved, I called the oncologist on call at my onc's practice, and he had no idea what it could be. The chemo combo I'm on now isn't known to have any cardiovascular side effects, he denied it could be the 4 days of steroids I was on last week (hmmmmm...... ) and thought it might possibly be a late side effect of the adriamycin I took over the summer.

He said not to do any biking or running over the weekend, and to try to get an echocardiogram on Monday. He said that perhaps the cardiologist would try to induce the throb.

I know it's thanksgiving weekend, but I'm pretty sure there will be no sign of this by MOnday (I've barely felt any trace of it today.) I'm worried that nothing will be found out, and I will not know how careful I have to be about exercise for the next few months, and will worry about the next chemo infusion..... and even if this has something to do with the adriamycin I took over the summer how can the steroids not be part of it......? I mean I took them for 4 days -- and barely slept for 5 nights because of them!

Anyway....... I'm bummed because I have an eye appointment on Monday I want to go to -- by bike of course. I will have to change it to Tuesday or Thursday (but not later because I need to see what all those steroids did to my eyes!) I hope this is nothing serious and that they can know that....... I did walk the dog today (a little slower at first, and 3 miles rather than 4) and had no symptoms at all. I've been walking every day for the last few (usually 4 miles w/dog) but nothing more. I had planned to swim one day this weekend, but maybe I will wait now til this is resolved ........ or something!

On the bright side I did feel better today.......... I've been sleeping a lot, and have been having these wonderful meals cooked by my husband. (This is not because of the cancer, either -- he always makes thanksgiving dinner. Am I lucky or what? He cooks every weekend, too, but not like he does at Thanksgiving.) In fact this year he made me this sugar free sweet potato pie to die for. I'm hoping no one else likes it...... I've eaten about half of it, and so far so good! :-) They've finished their pumpkin pie though.......

Yesterday we had a great thanksgiving at home. We had my mom & a wonderful guest I could not believe drove 3 hours each way to spend Thanksgiving with us in the middle of preparing to defend her PhD dissertation ...... I knew her when we were kids, and every time I've seen her since we've been grownups I am blown away....... She's gone of course-- stayed less than 24 hours -- but she was here, really, I didn't make it up!

Anyway if anyone knows anything about chest throbs after or during chemo or anything I'm listening. It was a bit disconcerting to find the onc on call so clueless about it. I was so hoping he'd say "Oh yeah that! It's because of the whatsis -- should be gone in a day or two. Yeah have an echocardiogram to make sure but don't worry." Oh well. At least I should have no trouble getting the echo.

nauseous

So after the steroid buzz wore off I was surprised to wake up on Monday morning with chemo nausea --talk about a delayed reaction! I did forget to push fluids -- next time I will have to remember to drink 2-3 liters a day. I did fine with this over the summer (I ate a watermelon every 2-3 days when water started tasting bad) but it's not so instinctive to push fluids when it's cold out -- and I think the nurse didn't worry about going through all the symptoms with me because I've been through chemo before, and really just a little while ago. (Too bad about my short attention span....)

I think pushing fluids will make a difference -- but I am also considering switching my chemo day from Thursday to Tuesday. Because I need to be on steroids for so many days I was wakeful and energetic and sleepless Wednesday through Sunday, and wiped out on Monday, and still tired today. The sleeplessness might work better Monday through Friday, when the alarm goes off at 6am, with the weekend to rest.....

Anyway that's a thought. And now I'm going to grab a nap and hope I get get out to walk and/ or swim later this morning. It's nice out -- pretty good biking weather! (low 40s) Two days in a row I'm missing it....... and these were the days I had this week; kids are off tomorrow and thanksgiving stuff starts....... On the other hand it looks like it will stay in the 40s through the weekend, so, hmm, we'll see what I can fit in!

Steroid Buzz

I had to take steroids Wednesday through Saturday, and it was too much. I don't even know about my eye pressures yet, though they do feel on the firm side -- right now I'm just talking about the choppy sleep and the crankiness. I anticipated it, and was careful to exercise every day, but I have still needed pharmaceutical help to sleep, every night...... and have never gotten more than a couple of uninterrupted hours at a time (& more often 1-1.5.)

Even so I skipped the last dose, yesterday afternoon. The doc said that the post chemo steroids were about avoiding fluid retention, and that the most dangerous place would be in the lungs -- and that he thought i'd be at a lower risk of it because of all the exercise. We did talk about dropping the last day or cutting the dose next time, if I did fine this time. I will bring that up before my next chemo.......

I'm also wondering whether maybe I should switch chemo days; Thursday is a good day if I'm going to be tired, because I can rest on the weekend -- but if I'm not going to be able to sleep, maybe I want to do it on Tuesdays instead, since I have to get up at 6-6:30 on weekdays.

Course I already made a friend I expect to see next time -- but I'd make others. I did get her email address, so I could tell her what happened.

I'm also feeling bothered by the cold. This is nothing new, though.... just winter, arriving early.

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......

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!

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

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.