3rd Chemo today

Sorry I haven't posted in awhile. I sat down to post a few times, but then decided that I didn't really have anything new to say about the cancer..... we've had a houseful of relatives, too, and I've been hanging out with them more than on the computer I guess..... also, my favorite computer sits in the room that is also the guest room...... I have to curtail my computer activities when people want to go to sleep! (The other computer is the laptop, which Matthew uses a lot, and Em lately does too.... even ALan sometimes does. BUt I don't like it much -- I only use it under duress, like when we're out of town and it's the only one that travels.)

ANyhow I went to my third infusion today. The hard part was having to get up at 7 when my kids didn't have to go to school.....that's probably the REAL reason why they have me take steroids the day before chemo -- so I can pop out of bed like toast after only 4-5 hours' sleep! (BOy that's a dated joke; who has pop-up toasters anymore? It's like telling your kids they sound like broken records.....)

Hmm, I haven't gotten real far with this posting. I'll have to pick up the pace or it's going to be a looooong post!

Okay so I got ready early and was sure I'd be early, but there was a glitch somewhere, because I was 15 mins late, and after a day of attributing it to the gale winds on the ride, I came home to hear my mom tell me that in fact I'd lollygagged getting the house and had left about 15 mins late.

I hadn't read about the wind forecast. There were like 30 mph winds with gusts of up to 50+ mph. When I was biking over the key bridge I was...... very glad that there was a concrete barrier between the sidewalk (where the bikes go too, like the Mass Ave bridge between Cambridge & Boston in MA) and the cars. I debated getting off my bike and walking, but I decided that would give the wind more time to blow my glasses off, so I kept riding. I passed a guy holding onto a pillar to keep from being blown away. I told him I'd never seen anything like this, and he laughed. BUt by the time I passed the next guy, who got onto the bridge after the big gust had passed, there was nothing to say; the wind was once again within the realm of the ordinary.

Joan was later getting out than I so she caught me a little before the MD line. (The routs starts in VA, get to DC after the Key bridge, and bike up the Capitol Crescent trail, where we cross the line into MD about..... maybe 4-5 miles from the doc's office? Joan will know the mileage better than I -- she has a computer on the bike she rides with me to chemo, and I don't.)

The doc said a lot of things, but basically I'm on track and none of the side effects are going to be serious or lasting, so I can continue. He referred me to the nurses about meds to help with indigestion. I got some other thing injected into my infusion bag to help (tagamet.) The indigestion started anyway; I had to roll down my pants in the infusion room, and I don't think it was because of the salad I ate for lunch. I wrote down some ideas the nurse gave me of things I can get at the pharmacy -- so far I've tried mylanta, maalox, and gas-x. The recommendations I got today were for mylecon, tagamet, and prilosec. (If any of youse guys have any experience with or knowledge of these meds, please share!)

My blood counts were good today -- in fact my WBC is high normal, which makes me wonder about the necessity of continuing to get neulasta...... (wbc=9.7, on a scale of 3.8-10.8.) The nurses said I do still need it, because my counts will go down with the chemo, but that if it's above range next time I should talk to the doc about whether or not to get neulasta next time. Even the red count's okay (HGB just in range and HCT just under) and platelets are okay too, 193 on a scale of 140-400.

Oh and then I got this wierd chest thing just at the very end, hours after I'd finished with the taxotere (which can cause breathing problems, but usually within the first 15 mins of the drip.) When I breathed in deeply it was like.... you know when you have a cold and suddenly it threatens to move into your chest and become bronchitis or pneumonia? It was like that, except I don't have a cold. I was okay when breathing regularly. They took my BP and listened to my chest and pronounced me well and fit to bike home. I wondered..... we talked about what to do if it got worse (georgetown ER is on the way home.)

In fact it was the right decision; when I got outside the wind was clearly a bigger problem than my chest, and the wind also seemed calmer once we got onto the trail. (There's .5-1 mile of streets between the medical office building and the trail entrance.) Then when we were only a third of the way home I realized that my chest was all better! I guess it needed some deep heavy biking breathing to help it go away. (YOu know, that works when I'm actually sick, too -- when I'm getting better but still feeling crud in my chest. And now I'm remembering that it helped get the anesthesia out of my lungs after surgery.)

Joan and I had debated taking the train home instead of riding because of the winds, but we were glad we didn't, because it wasn't as bad as the morning had been -- though actually I took long enough getting home that Alan and the other folks on the home front were worried. I've done it in an hour after eye appointments, but this took an hour 45 mins. (BUt hey I was on benadryl..... and chemo, but I think it's the benadryl at that point -- tomorrow it will be the chemo.) I didn't feel slow, but I can always tell I am anyway when Joan has to stop and wait at the tops of hills...... (THey haven't worried before but they haven't been home before -- I'm usually just late for the kids. THEY only worried last time when Matthew was sick and his fever started to go up...... and rightly so! Guess who took care of him..... but I wrote about that, didn't I?)

Anyway I was proud of myself today for not only having ridden all 26 miles in strong winds, but for having enjoyed it too! :-D

Chemo burn

I have this burn on the back of my left hand -- I had been assuming that I must have burned myself somehow on Friday, when I had myself a little cooking party and made brownies and that yummy red lentil - oat soup I can't seem to get enough of these days. I've been keeping an eye on the burn and putting vitamin E on it, and marveling at its rather large size and my obvious pain tolerance/ obliviousness in having completely missed getting it! (I have always been proud of my high pain tolerance threshold, but lately I am seeing that the obliviousness on the flip side of that can be dangerous...... Someone in better tune with their body -- a whiner even!-- would have caught the breast cancer sooner, I think. YOu know those people who go to the doctor saying "I don't know; it just doesn't feel right." Yeah, that's the kind of awareness I'm missing..... somehow gradual change just seems like the new reality to me.....)

Anyway so in the early morning when I woke up (middle of the night for me) I realized that the burn was not behaving like a regular burn either, exactly, and didn't feel quite like a regular burn. I also realized that it happens to be the injection site of my last chemo, and it hurt for days after the chemo was done. In fact I can't tell you whether it ever stopped hurting (since it only hurt when I touched it -- so I mostly didn't.) I made the connection because it hurts now, where it's red, though not very much -- and I'm pretty sure it's the same hurt as right after (and maybe during?) chemo. Maybe it's hurt the whole time since then (over a week.) Isn't that interesting? I don't think it's dangerous, but I had Alan take a picture so I can show them next time I go for chemo.

I found an online discussion where someone describes a chemo burn exactly like mine and recommends preparation H for it -- so I put some on. However, the burn really seems to be on the inside more than the outside......

In terms of other stuff...... My indigestion was bad yesterday pm (after we went out for Mexican food..... despite how careful I thought I was!) but is much better today (haven't eaten anything but tea and brownies -- the ones I made are pretty healthful actually.)
I walked the dog for over 2 hrs yesterday (I'm guessing 7.5 miles; they felt like 17 min miles rather than 15) which was very nice. Today I managed to get out of going shopping with everyone else -- because Mom's here and drove them! However, I lost the option of going swimming while they are out because I left my pool bag in the trunk of the car, which they have....... so I guess I should take Pinky out for another walk.... The sun did JUST come out; maybe it's a nice day for it.

I'm still going to have to do some CHristmas shopping, unfortunately, though I think the gang may help me while they are out...... and I have started to make a couple of things, which is infinitely cooler -- especially if I get them finished!!! :-D

Continued Gut Troubles

I'm starting to worry about whether this chemo is causing some kind of damage to my gut lining that might stay on afterwards..... I feel like a bit of a whiner (after the palpitations & cardio follow up) but I wonder if I might need to follow up on it. I had gone on the BRAT diet a couple of days ago -- and it helped a lot. But I've been so tired, I haven't really exercised. So finally today I went swimming. I did a couple of errands afterwards, picked up Em, took her to Target, got Matthew from school (he has debate after school a couple of days a week) and by the time I got home I was so hungry I had my lunch all planned.......

I had a sandwich of avocado, salmon, tomatoes, pickles and mustard. It was divine..... I had a 2nd one. (Open face sandwiches -- bread is not so much my thing.... plus, I never would have been able to get my mouth around it with another piece of bread on it!) I know it sounds like strange food -- I described it to Matthew and he said "and some mini marshmallows!" I wouldn't eat that, but he's right, it does sound like a kitchen sink sandwich..... However -- I eat like that all the time, and it's not usually a problem! (Especially not those pickles. THey were homemade by these friends of ours and really really nice -- and I don't taste much salt in them, as I do in commercial pickles. I'm going to keep putting cucumbers in there as I use theirs up.......)

Anyway I had been okay (not perfect but okay), but I am not now (couldn't eat dinner.) I bet it was all fine except for the pickes and mustard...... but the thing is, I've been kinda nauseous in the morning (a couple of hours after I get up -- right when I need to eat breakfast!) The pickles and mustard counter the nausea nicely ..... though at the time I actually take an antinausea pill..... which of course makes me sleepy.... which is part of why I haven't been exercising much lately. Bit of a catch 22.....

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........

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.....

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......

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.