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Wednesday, December 17, 2008

Indigestion and Parenting a sick kid

I think the indigestion is chemo related, despite the nurses' claims to the contrary. They do list diarrhea, constipation, and nausea as potential side effects, and indigestion is something that..... well let's just say that if there any out there to be had it tends to find me. I'm not talking about an upset or sour stomach; this is all lower gut stuff -- gas and bloating. SO I eat fine, and then later I pay. Last chemo it started 9 days after (a couple of days after Thanksgiving, which was nice.) This time the gut gurgles started at the end of the infusion last Thursday. I ignored them, though -- until the trouble got so bad it couldn't be ignored. Yesterday I started the BRAT diet, which is booooorrring.... but I do feel better.

Meanwhile Matthew has been sick since last THursday. (I had to leave him home alone sick to go to chemo. His fever wasn't that high yet though - and he IS fifteen.) It's been taking a long time! I've taken him to the doctor's twice... each time worrying that sitting in the waiting room with all those coughing kids would do me in. (Matthew's been so careful about me -- even sitting in the back seat of the car when I've taken him to the doctor! ..... so far I've been all right!) Today was his first day without fever since last Thursday -- but he's broken out in hives, which the doc thinks is an allergic reaction to the illness..... (who knew that was possible??) I have to go out and get Matthew some zyrtec, which should take him through the overnight and the day, without knocking him out at school. He's still coughing a lot..... but the doc says he can go to school tomorrow.

I am thinking that the neulasta might me helping me here -- this time last chemo my white count was through the roof. I'll get it checked tomorrow, but I'm thinking maybe this is good timing for me........

Friday, December 12, 2008

2nd taxotere-carboplatin infusion

It was raining yesterday -- so I got to try out my new "hurricane jacket"! It really did keep me dry, for all 26 miles! Not so the rain pants I'd gotten for free...... I hear there's some kinda spray I can put on them though -- will keep eyes open for it. Meanwhile, the upper body is the main thing, so I was fine.

So I biked to chemo and back, with my loyal friend Joan. I got to take only one 4mg tab of decadron (steroid) the day before, but had to stick with 10 on chemo day, since that's already a cut from the 20 most people get. However, the doctor said I could skip the steroid these next two days -- at my discretion; I could also take a 4 mg tab this morning. (I did. Alan was more comfortable with a more gradual decrease -- and I kinda am too. Besides, I seem to be more tired this time..... maybe it was hard biking in the rain?)

I biked there again today for the neulasta shot, and Joan came again. I rode the nice bike today -- I seem to be slower the day after chemo; this is the 2nd time I've noticed that. (It didn't happen on taxol -- or not so noticeably, if it did. I don't know about AC -- I forgot. Maybe it's in the old blog posts.) Today was hard because it was cold and windy -- and probably also because day after chemo. So now I've ridden 52 miles in the last 2 days -- I think I will sleep. I sure am tired. Maybe hard biking is enough against the decadron, if I have less of it? Or maybe this chemo is actually hard enough in some way that the decadron is necessary..... not sure.

I saw a different doc this time, because mine was out of town. This was a young woman, and she was great. She talked about trying to get zometa for her patients (the bisphosphinate I want!!) and also said she'd seen a study of cancer survivors who engage in vigorous exercise having a 50% better survival rate. (This she volunteered when she came in the room and saw me and Joan with all our biking garb. It was a nice reaction, because we were a bit of a mess!)

There was more but I'm tired. I'll tell ya later if I think of it. It went fine, basically. The only complication is, Matthew's sick. I actually had to leave him home alone sick while I went to chemo. He's big and competent -- but I didn't like being that unavailable. In fact it went fine until I was on my way home and his temp was going up. We are working on getting him the meds ahead of the temp spike..... (You would think I'd have had this in the bag -- it's just the same as when I had to take meds while on taxol to get ahead of the pain.... but nooooooo, had to relearn it all over again.....) I didn't make it home before Em yesterday either, though I expected to, since she was going to work in the library after school until 4 -- but it turned out it was closed for some meeting so she came home at the regular time, 2:40. However, she was invaluable -- Matthew started to get needy right around then and she totally took care of him -- and washed her hands about 17 times in between everything she did, she promised me before I even asked!

It was kinda funny -- when I came in the back door all wet and muddy and asked Em to go bring me the shoe/mud towel from the front door, she did -- and then she said she'd gotten to watch about 20 minutes of her movie in the last hour and a half. (I felt like "welcome to my life!") She said she hadn't minded helping Matthew, but now she kind of didn't want to be asked to help anymore for awhile. It was very cute, and quite reasonable. (Course it also meant that she wanted me to get her food while I was all wet and drippy. SHe waited.) Then later when I asked Matthew if he'd done this and that -- taken meds, taken his temp, refilled his water, written the meds and times and temps and times down, he answered "Emily did it" to every question. It was somehow even more impressive. It was heartening actually.

And I'm glad it's the weekend, because I really don't want to be the parent in charge of a sick kid, while I'm on chemo. I am getting neulasta shots, which boost my white count, and should help a lot with avoiding catching illnesses -- but I'm told that neutropenia is still a risk -- maybe because other white cells are not overproducing? NOt sure about this. I took Matthew to the doctor this evening, and he tested negative for strep and flu. (We've all had the flu shot this year but it's only 85%.) The doc volunteered to order the flu test after I told him I was on chemo and concerned about how many days I was being exposed to illness. Apparently if you can get a flu dx within 48 hrs you can start this med that makes it last shorter.

Matthew seemed well just after seeing the doctor actually. He said it was because he got to take off his sweater, and was so much more comfortable. ALan had told him to dress warmly to "sweat it out" and the doc had told him to stay cool. (I had told him to listen to his body and bundle up when he's cold, and take it off when he's hot. How can anyone do otherwise??!! But he said ALan seemed so sure of himself. Now let's think -- who worked in a clinic with nurses for her best friends for 14 years?) Anyway, he seemed a lot more comfortable after that -- maybe some combo of physical comfort and getting empowered to listen to his body....

And now I have to go get a good night's sleep so I can go buy popsicles and clementines and stuff for him tomorrow. I just couldn't fit it in today.....

Tuesday, December 9, 2008

Heart Normal

I talked with the cardiologist today. My heart pump function is fine, he said. If anything was going to get affected by the chemo, that was it. I pressed for clarification & he said that if the adriamycin damaged the heart, the damage must be pretty small because it doesn’t show up on the ultrasound. (Maybe that’s normal – I don’t know – but I sure found it reassuring!!) I have to repeat some bloodwork, though – my magnesium level was low (and he wants me to start taking a supplement now) and my thyroid level is also a little low. So I will repeat the bloodwork and we’ll see…. He did say that low magnesium levels can cause a predisposition to palpitations and arrhythmia.

So -- any words of wisdom about these things are most welcome. I'm feeling a distinct lack of wisdom about these matters......

Sunday, December 7, 2008

hair & GI stuff

It's freezing here. It would have been nice if I could have just followed my doctor's plan and been done with chemo -- the timing was such that I would have had a little fur cover for winter, and been starting radiation now, which is a nice topical burning, just right for when it's freezing outside.

I mean if you have to do it, isn't winter the time? You know? But no, I have to be stubborn and have more chemo. I still stand by my reasons -- most of the time -- I hope. But the timing was better the other way. I mean, I can't really complain about hitting winter when I'm going into my 3rd course of chemo, given that each course is 3 months long and I had to stop for surgery after the 2nd, & take a break before and after it of a month each. I did in fact do chemo for my three favorite seasons since the start of my breast cancer treatment -- but they're over now.... just because when you're not in PR, seasons happen!

I do worry that this part will be the hardest just because it's winter. I always have a hard time with winter, so why should this one be different? It is better since we moved (3 month winters here, as opposed to 5.5 month winters in BOston. They were so long there, I used to feel like a mole blinking in the sunlight after they ended. Here they actually end soon enough that I still remember who I am afterwards -- whew!)

ANyway -- my hair is falling out again. It wasn't keeping me very warm anyway -- it's only an inch or two long, and the first inch is thin and white. It's nice that most of it started coming in thicker and brown after the chemo hair. (I had hair while I was on weekly taxol, but it was white and soft, like a baby duck. Not quiiite real hair. I did worry about the white, but I think most of it was just temporary actually. I did have some real white hair before, and it was thick and wiry, not wispy and flyaway.) Anyway this is not a big deal -- except that I have to get my friend to come shave me again before I get hair all over -- or worse, under -- everything. (Will have to start wearing hats when I dress, so I don't get hair under my shirt and itch all day like after a new haircut.)

What's more of a problem for me is that I have been having GI problems for the last week. It just occurred to me that it could be the chemo. I will ask. I haven't had that before, from chemo -- however I have also not had GI problems before chemo that remained unresolved after a day or two of low eating and bland food diet. It's not a tummy ache; I don't get those. It's gas and bloating, very gross and uncomfortable. They said the chemo could cause diarrhea or constipation, but this is neither. Feels like my gut would prefer if I didn't eat much of anything really -- which wouldn't be the best idea, nutritionally, if it has to go on for months.... I will have to check in with them about it.

Friday, December 5, 2008

Oops

I lost track of time this afternoon and didn't call the cardiologist's office until it was closed..... I actually managed to get distracted despite a couple of reminders in the interim! If I'd been able to call in the morning it would have been fine; I usually do a good job getting important stuff done when I can get it done first. THing is, the doctor wanted me to call late in the day..... and I guess that's a time when lots of things happen around here and I'm busy doing mom stuff and my own stuff gets left til later.

So anyway I won't find out til MOnday. I wasn't planning to do any heavy exercise over the weekend anyway, I don't think...... but I'm disappointed to have to wait that long for such a dumb reason. I considered leaving a message for the on-call doctor...... but the outgoing message said clearly that any non emergency calls would not be answered.

Tuesday, December 2, 2008

Great Cardiologist! and a knee comment

The cardiologist was great. He did an EKG and had some blood drawn for things I don't usually have checked (like potassium and magnesium) and had me schedule an echocardiogram. (That's on Thursday.) The EKG was normal, and he said to call the day after the echo, and go easy on the biking til we have the results, though he thinks they will probably be okay. (He said not to worry about anything else I do.) He explained a lot of stuff. I will try to have questions ready for Friday -- since he seemed great about answering them all.

He didn't seem to mind that I had biked there..... (I didn't tell him it wa 13 miles each way, but he HAS my address.) I think the main thing was, I have been biking wearing a heart rate monitor and making sure my HR stays within range -- in my case my max is 180, so try to keep it under like 175, and usually under 170. I did tell him that. Today it was easier than yesterday -- I think my HR is better, though it could be that I was riding slower because my R knee is hurting. (Don't think so, though, given the time -- and my resting HR is a little better too.) I think he was cool about the biking because he has a biking past -- in fact he said he and my oncologist met 20 years ago as biking buddies! (Now why does that make me feel like I'm in good hands? But it does!)

I don't mind missing tomorrow's ride, though it is out to the bread store in Herndon..... but actually my right knee has been talking to me. Given the 26 miles I rode today and the 26 I rode yesterday (and the 26 I am probably going to be riding again on thursday -- to get the echocardiogram!) I think my knee would like to go to the chiropractor tomorrow and go swimming.

On knees -- I don't know if I mentioned this, but my Mayo oncologist explained that I have two separate benign conditions in my two separate knees. I had asked him to order an MRI on my right knee, as something had been seen on it on an Xray of my hip @ g-town -- but I had mentioned the irony that it's my left knee that usually gives me enough trouble to go to the chiropractor .... so he ordered a scan of them both. At the time I didn't appreciate it, because I was hoping to see the pathology from my removed breast, but now that I've seen it and am dealing with it and my KNEE hurts, I think it's really neat that he took the time to explain it and show me pictures of it. (I think it's SO COOL when doctors do wonderful things like that. I have had a lot of luck lately with that kind of thing, haven't I???)

Now if I were really together I'd find that knee report and bring it to the chiropractor. WOuldn't that be smart? I'll write myself a note..... too tired now. Now what I need to do is walk the dog and make dinner -- but what I really WANT to do is have a hot bath. :-D

Monday, December 1, 2008

Cardiologist Visit tomorrow

So tomorrow I go to see this cardiologist and hope he knows what kind of test to do (echo-cardiogram? EKG? MUGA scan? All of the above?) At least I have a problem I know needs addressed, NOW, thanks to Joan, who brought me her husband's heart rate monitor yesterday and then today loaned me her blood pressure cuff -- despite the fact that the pulsing I got on Thanksgiving day has not recurred.

My BP looks okay, low normal as usual. HOwever, my heart rate is abnormal. It's never been as low as you would think for someone who does as much regular physical activity as I do...... and I guess it did go up 5-10 beats/min during my first 6 months of chemo. However, it's now 20 beats/min above normal. I'm talking I'm getting resting pulses around 100.

I had an eye appointment today and I biked to it wearing this heart rate monitor, being careful not to let my HR go above 170-175, which is a good upper limit for me during vigorous exercise. Except today I got up to it without a whole lot of vigor...... Biking up small hills would get me above 160, which is nuts. I'm really glad I had the monitor, because without it it would really not have been intuitive to ride that slowly. Joan came with me (because she's just that way.) I asked her what our pace was a couple of times, so I know I was getting heart rates in the 160s at 10-11 mph.

I was on my old mountain bike -- and once we were going slightly uphill on the CCT -- and the other time going slightly downhill, but with a headwind. Still I'm not sure I could keep up with the Babes at the pace I would need to ride to keep my HR in a safe range, even on the Pilot (my nice road bike.)

So.... while I have had no recurrence of the Thanksgiving pulsing, I have something to bring to the cardiologist. I need to know what is going on with me and have it addressed -- by medicine, stopping the chemo, whatever. (Of course so far I'm hearing denial that the chemo or steroids could have caused this -- but something did, and it happened a week after I had them, so it seems kinda like a logical connection to look for, you know?)

I sure hope this guy knows what to do, and that something can be done that works. At this point I'm not sure how much I can ride my bike, though the monitor is a godsend (maybe I should make up a new word -- "joansend"?) and I'm afraid to swim (even though I can!) because I can't wear the heart rate monitor in the water ..... and of course I don't dare have sex......

Aren't I maybe a wee bit young and healthy for this kinda thing? Yeah I know I have breast cancer, and it was caught kinda late -- but even with that and this heart rate stuff, I still feel healthy -- particularly healthy, healthier than most, as usual. The only thing that bothered me today really was my right knee, on the ride back from Chevy Chase. My knees apparently each have separate benign conditions, my Mayo oncologist told me after the MRI of them. Nice to know, you know? Maybe if I can't ride on Wednesday I'll pay a visit to my favorite chiropractor and have it, um, fixed (I don't think I've seen him since before my mastectomy.) Then if I'm cleared to, maybe I can go swimming.....