Dancing through Chemo

What was I saying before the Brothers of the Baladi show about how I would probably have felt well enough to perform that night? No, I wouldn’t have. It was a wonderful show, I’m glad I went, and I did get up on the dance floor during quite a few of the “open dance” songs, but not at my usual energy level, and there is a huge difference between that and giving your all during a performance.

I did dance again at a local Mediterranean restaurant a couple of weeks ago, and again last Saturday night. I’ve been dancing there once or twice a month for years now, except during slow periods when they quit having dancers. But I had more or less taken myself out of the rotation after my first surgery, because I just didn’t know how I would be feeling on any given weekend. The (lovely and wonderful) dancer who does the scheduling was very understanding about the whole thing. I missed it though, and whether it’s performance or classes, it makes me feel like my old self again. There’s no chemo, there’s no cancer, there’s no worry, there’s just pure love of the music and the movement. And yet...

I’m not capable of as much as I was just a month or two ago. The first ten-minute set had me out of breath. I recovered, but later the second set completely wiped me. It wasn’t even as long. Then all three of us did a finale song together, and I didn’t have much to give. And then, while we were waiting for our pay & food, one of the owners who doesn’t get in much came by, and some friends of mine, and we danced one more song for them. I probably should not have done that. I was exhausted by the time I got home.

It was worth it though, and I was none the worse by morning. Maybe that just means I should do that sort of thing more often.

3 AC down, 1 to go

That's hard to believe. Obviously I have no idea how I'll react to the 12 weeks of Taxol, but so far the AC hasn't been that bad to me. I'm still feeling pretty good today, though I'm really sleepy. I slept very well last night, too, in spite of the steroid, so it isn't that.

I've got big plans for tonight though, no time to be tired! I'm going to see Portland-based Brothers of the Baladi, performing here in Boise with 4 of my favorite local dancers featured! Initially I was to have been one of the 4, but I didn't know if I would be up to it right after a chemo treatment. Turns out I probably would have been, but these guys are so great...I'd hate to be at less than my best. As it is, I get to just enjoy the show.

Chemo yesterday went well. My blood counts were once again completely within the normal range. I hope they stay pretty high this time too...I think my husband may be coming down with a cold. I definitely don't need any of that!

Live Nude Chemo!

Okay, I made up the nude part. Only my head is nude. Except it is still covered with the gorgeous henna designs my friend Mearah did for me. But I am writing live from the chemo suite! Woo!

It probably is really weird that I like going to chemo. There's a lot not to like about the drugs themselves, obviously, but the process of getting them has a lot to be said for it:

1. Afternoon off every two weeks
2. Really nice doctors, nurses and staff who will make a fuss over you and bring you things like blankets and beverages
3. How many other times in your life are you actually REQUIRED to kick back in a recliner and goof off for a couple of hours?
4. Wi-fi in the chemo suite greatly enhances the goofing-off possibilities.

I guess that wasn't that many things. But it's still pretty fun, for a medical procedure.
The only thing I really hate about it is the taste/smell of the saline when they flush my port. Thank goodness for Altoids.

I haven't really decided what I'm going to do today. I brought a magazine, and I have a DVD in my bag - one of my old favorites, The Man Who Would Be King - and my cute little pink iPod with lots of good music and a couple of TV shows loaded up. But I'll probably do the same thing I did last time, and the time before - surf the web. Endless hours of entertainment right there. :-)

Speaking of lucky

I have one breast that’s still big and floppy, and one that’s a little smaller, definitely higher, with a big incision scar all the way down the side and a nipple that’s more oval than round and points a bit to the outside; I have two indentations/scars where I had drains from two surgeries; I have scar tissue still healing in my breast that feels hard and thick; I have a port sticking up under my skin on the other side, with a nice long incision scar alongside; and I have a bald head. And you know what else I have? A husband who, throughout this entire ordeal, has never for one moment let me feel that he finds me any less than completely sexy, desireable and beautiful.

My attitude

I’m getting told a lot lately that I have a great attitude, or that I’m really strong, brave, inspiring. I know the people who say it are sincere, and they mean well, but honestly I’m getting tired of hearing it. All I’m doing that’s apparently so amazing is continuing to live my life. Is it really that impressive that I get up and go to work 5 days a week? Because it’s the same thing I’ve been doing the entire time you’ve known me. You do it, too. Should I start congratulating you?

Okay, I get it that people are impressed that I’m working full-time during chemo. Or that I still do dance performances when I’m up to it. Either or both of those things could change, it’s still pretty early in my treatment. But seriously, the fact that my side effects so far are mostly restricted to the weekend after chemo and are minimal to nonexistent the rest of the time doesn’t mean I’m brave or amazing. It means I’m LUCKY. Most days I feel fine, so I continue to do the things that pay the bills and/or make me happy. Being amazed at that implies that I’m supposed to just lie down and die or something. So sometimes I just want to tell people to save the amazement for when I do something truly impressive, like cure cancer. :-)

The more I read about other women who have done AC, the more I think I truly am amazingly fortunate. My first treatment was harder than the second. I felt mildly queasy but pretty good the day of and the day after, then really crappy on the third day (Saturday), a little better the fourth day, and still mildly queasy but more or less okay days five and six; back to normal by day seven. (I timed it that way on purpose, so that the worst of it would be on weekends and not affect my work schedule.) When I went in for my second treatment my blood counts came back completely normal. The second treatment felt the same as the first for three days, but Sunday morning I felt absolutely fine. Yes, I’m bald, and I do have to be careful about sickness and infection, but so far the other side effects are just not that bad for me. So I’m not being brave, I’m just lucky, lucky, lucky.

Still, I’m aware that chemo fatigue is cumulative and will probably build on me the longer I’m in treatment. I have 2 more bi-weekly rounds of AC and then 12 weekly Taxol, and by the time I’m done with all of that I may be feeling like a hero for just getting out of bed in the morning. So I probably shouldn’t discourage anyone from calling me amazing just for showing up...in a few months that may be about all I can do.

Henna head

Having henna designs put on my head was a lovely experience. My friend Mearah has been doing this for a long time, and she's very good. I knew she had some ideas about what she wanted to do, so I went in with no preferences of my own, just put myself entirely in her hands. That was a good decision. :-)

On my way home from her studio, I stopped at the grocery store for a couple of things, and it's the first time I've been out in public with nothing covering my bald head. It felt strange, a little self-conscious, a little defiant; but nothing really traumatic. There were some stares and giggles from children, nothing worth taking seriously. The cashier had some curious questions about the henna. I think the fact that I still have eyebrows and eyelashes and don't actually look sick makes it more like I just decided to be bald, which is bound to freak people out. Their problem, not mine.

Hair loss, for real this time

Thursday, August 05, 2010

I lost a lot of my head stubble in the shower today. My head feels a lot better - it's been really tender and sensitive for the last couple of days, a sign that the hair was ready to fall out. I shaved it all down a week ago at the first sign of hair loss, but today, three weeks to the day after my first treatment, I finally really look bald. It's a little weird, not quite as attractive as the all-over stubble look, but I don't mind. The timing is perfect - a friend is going to henna-tattoo my head tomorrow night, and I was starting to worry about all that stubble getting in the way. I can hardly wait to see what she comes up with!

In which I was patronized and pissed off, or maybe I was just crabby

Tuesday, August 03, 2010

I take some things seriously that I never did before. One of the things I am now taking seriously is some chronic pain I've had in my lower left abdomen (sometimes lower back) for quite some time now. It only really hurts in certain positions, and kinda comes and goes in terms of severity, so I never thought too much of it, but since being diagnosed with cancer I tend to think everything could be a tumor. So when I saw my oncologist before my last chemo treatment, I brought this up. She asked a couple of questions about it, and said that her suspicion was low, but that it was worth checking out for peace of mind and that she'd order a CT scan.

I hadn't heard anything back about scheduling, so I called in this morning. There was no order on file, but the lady I talked to did seem to have notes about the kind & location of pain I was having, so there's a record that conversation that took place. She said she'd talk to the nurse & the doctor, get an order and get me scheduled. Fine, all good. SO then I get a call back a few minutes ago from one of the nurses, and she basically acted like nothing had ever been said about a CT scan, and she actually said this: "Why do we think we need one?" Umm, excuse me, but WE think we need one because WE talked to OUR doctor and she agreed it was worth checking into. WE (meaning I) didn't make this up. So maybe WE (meaning you) should quit talking to me like I'm some kind of hypochondriac idiot.

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Edited to add:
The same nurse did call me back to schedule the scan, was very nice about it, and didn't seem patronizing at all, so maybe I'm just cranky. :-P

Chemo round 2, day 5

Tuesday, August 03, 2010

Still feeling totally clear of nausea. A little tired, a little fuzzy-headed (ha!), but overall feeling amazingly well. I wish I knew what was different between the first treatment and this one, because I'd sure prefer my future treatments to go down more like the second time.

Chemo round 2, day 3

Sunday, August 01, 2010

So much better. Still a little bit tender, and a slight headache, but not like yesterday. And so far there is no nausea whatsoever today. Hooray for good meds!

Chemo round 2, day 2

Saturday, July 31, 2010

What was I whining about with the smaller dose? I feel awful. Hurting all over, barely keeping the nausea at bay.

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Yes, folks, I'm seeing a pattern developing here - the Saturday after chemo is a very bad day.

Day 1 after second chemo

Friday, July 30, 2010

Still feeling great from the steroids & other meds yesterday. A little headachy, definitely not hungry, but I've packed myself all kinds of good easy food to snack on all day at work...some leftover rib meat from dinner, a couple of clementines, carrots, bell pepper slices, Greek yogurt, and a few of my mom's awesome cottage cheese patties. Plus I have some lovely fresh organic beet/wheatgrass juice at work from a friend.

Now that I've had some time to think, I'm a little weirded out by a couple of things from yesterday. The fact that my dose was lowered a little bit because I lost weight bothers me. Will it still work as well? My side effects are controlled very well, so why can't I have the full dose? And the fact that my blood counts came back perfectly normal makes me wonder, too. Is this working? Maybe I should assume that the medicine is too busy attacking cancer cells to mess with my healthy cells as much, or that the Neulasta works REALLY well for me. Things to ask the doctor next time. She's really responsive to my questions and concerns, I just love her.

Another one from my second chemo treatment

Thursday, July 29, 2010
And I couldn't wait any longer on the hair. It's all gone!




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The day of my first chemo treatment one of the nurses told me I had about 19 days left with hair. I decided I didn't want to be out somewhere and have my hair falling out in chunks, so I determined right there to shave my head the weekend prior to the 19-day mark. But the morning of day 14 I was already getting some hair loss...not a lot, but a noticeable number of hairs each time I ran my hands through it. And that evening, I found that if I actually pulled, I could get an actual chunk that just came right out. It was gross and I didn't want to deal with it, so I got my husband to shave me right then. And I was surprised to find that I liked it! First he ran the clippers over with a short template on, which I guess gave me a little preview of what it may look like while it's growing back in. It was cute. Then he took the template off and took me all the way down to the G.I. Jane, and I still liked it. I was VERY angry when I first found out I would have to do chemo, and a lot of that was because of my hair, which I had been growing out for a couple of years. It's not that long hair was really tremendously flattering on me, but as a bellydancer I really liked having it. I had managed to grow it to hip-length, and I wasn't really done; but life had other plans for me. I was at least able to donate it to an organization that makes wigs for teen & child cancer patients - 19 inches! And here I am, not hating my bald head at all.

Second chemo treatment

Thursday, July 29, 2010

Is it weird that I'm excited to go to chemo? Because I really am. I guess a lot of it is that whole "taking action" thing again. Plus, I see people every day who are on my side, pulling for me, but I love going to the hospital and seeing the doctors and nurses who are not only on my side but can actually do something about it. Yeah, I love going to the hospital. That's definitely weird.

Plus there's the whole guilt-free afternoon off thing. I can sit there and surf the web, watch a movie, read, update my Facebook status way too frequently, anything I want - as long as what I want includes sitting there while medicine drips into me. Today I'm taking a few wigs in to donate to the accessory room, so maybe I'll sit in there and play for awhile. And of course there's my awesome new chemo shirt. I need to start working on another one for next time!

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The shirts I had made to wear to chemo were a big hit with my doctor and the nursing staff. Here's the first one and the second one.

Day 12

Tuesday, July 27, 2010

...but I kind of quit counting once I felt fine. And I truly do, no adverse effects whatsoever at this point. I fall asleep early these days, but I wake up early, too. The only downside to that is that it tends to mean I see less of my night-owl husband.

I'm actually looking forward to going back to chemo on Thursday, and to shaving my head Saturday. That's probably weird. But I just feel better when I'm taking some action, moving forward, doing something about it! I guess I need to just remember that everything I do to take good care of myself in between treatments is also doing something.

One week out, normal again

Thursday, July 22, 2010

I am awake way too early. It's typical these days, I fall asleep easily once I go to bed, but if I wake up in the wee hours I might as well just get up for the day, because I'm not getting back to sleep. I did go to bed at 9:30 last night though. It was still light out. I wasn't that tired, I was just done.

I feel good today. That last remaining undercurrent of queasiness seems pretty much gone, though I will treat that notion with all due caution. Still, I feel pretty lucky. From what I've read around the web, first chemo has hit some people a lot harder. One week after my first treatment, I feel like myself.

Day 6 after first chemo treatment

Wednesday, July 21, 2010

Feeling pretty okay today. I tried to start the day with a Bar Method DVD (Designer Sculpting, the easiest of the 3 I have), but felt really queasy before getting beyond the initial arm exercises, so I stopped. Exercising on an empty stomach has never been a problem for me before, but I think from now on I'm going to have to be careful about that. I had a raspberry-yogurt smoothie and it settled my nausea right down, and I'll probably try to finish the rest of the DVD after work. Keeping a little food in my belly definitely helps with the remaining little bit of queasiness I'm still feeling.

I have lost a few pounds in the last 2 or 3 weeks, actually all of the 8ish pounds I had gained since my diagnosis. I'm not supposed to be losing weight right now, so we'll see if I get in trouble for that at my next appointment. I am eating well, and if I need to I can easily add in more calories, I just don't want to eat a lot of the high-calorie empty crap that put all that fat on me in the first place. Fruits, veggies, proteins and a few high-quality grains are all I want to focus on. Well, that and a little chocolate!

I have a little bit of a headache again today. I guess I will try taking some Tylenol, since that is the only OTC painkiller that doesn't mess with your platelets. It usually doesn't work on my headaches, but this is not one of my typical horrible headaches, so maybe it will do the trick.

Almost back to normal, and a chemo guilt dream

Tuesday, July 20, 2010

Normal with an undercurrent of yuck. Just the tiniest hint of nausea underlying everything, but I haven't even taken anything for it. I was told to take Zofran every 12 hours for 2-3 days after the Emend ran out...today would be day 3. I also have a "take as needed" med, but I'm saving it for dire emergencies now that I found out it's also used as an anti-psychotic. Weird.

Eating smaller, more frequent meals seems to be a good way to go with this - I feel icky if I eat my former normal portion sizes. I really need to focus on getting more veggies in, though I have at least been eating plenty of fruit.

Oh! I just remembered...I dreamed I was at some outdoor reception with a buffet, and I was sneaking around to where the sushi was laid out because I knew I wasn't supposed to have any! I took a couple of pieces made with crab, figuring that was okay because it wasn't raw, but I felt really furtive. Too funny.

Back to work on Monday

Monday, July 19, 2010

Back to work today, and I'm ready. I slept a LOT yesterday; Saturday too, but more so yesterday I think. I still slept well last night though, just woke up a bit early this morning. I still have a mild headache I can't quite shake, but other than that I feel pretty good. I'll still take my Zofran today, but I'm not experiencing any nausea at all at the moment. Actually I'm hungry.

I'm tempted to go to my friend's bellydance drills class after work, I feel that "normal". Who knows how my energy level will be by that point, but I may give it a try. It would feel so good!

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August 8: I did go to drill class, and it did feel good. I had to slow down a few times because the combination of exercise and heat made me start to get queasy, but mostly I was okay.

Yep, chemo is still yucky.

Some brilliant insight from the third day after my first treatment:

Sunday, July 18, 2010

Blech. Not really that bad, but blech. Slight headache that just won't go away, and I definitely need the nausea pills today.

Chemo gets unpleasant

This is from the Saturday after my first treatment. I get my treatments on Thursday afternoons, and Saturday is definitely my worst day.

Saturday, July 17, 2010

Definitely not feeling as well today. The nausea pills are still pretty much working, though I did have to throw in one of the "as needed" on top of the Emend. I feel slightly achy and really tender, especially around the neck and jaw. It's not unlike the tenderness I've experienced with having a hangover, though fortunately without the headache that usually accompanies that.

I feel a little self-absorbed posting all this online, but I mainly just want to have a record that's easy for me to get to - this is all so new, and I'm feeling my way through it as it goes, but I want to be able to remember and compare and look for patterns as I go along.

Day 1 after first chemo treatment

I had the first of four rounds of AC (Adriamycin & Cytoxan) on July 15, 2010. I'm on a dose-dense schedule, so I get a treatment every 2 weeks. After that's done, I'll do 12 weekly treatments of Taxol. I started posting pretty frequently about how chemo made me feel, at least while it was making me feel bad. Here's the first chemo post:

Friday, July 16, 2010

So far so good. My appetite is pretty low, but there isn't more than a barely noticeable undercurrent of nausea. I feel like if I were to do something silly like eat way too many sweets, spin around in circles, or watch a 3D action movie I'd probably feel pretty sick, but since I'm not going to do those things I'm fine. I did feel a little yucky after going back in for my Neulasta shot this afternoon, but one of my "as needed" nausea pills seems to have wiped that out pretty well. I may even eat my lunch after all - yummy Thai lettuce wraps leftover from last night's dinner.

Yeah, so far all the extra meds are treating me right. I even did a Bar Method DVD last night, because I figured I might as well take advantage of feeling so good, since it may not last.

Oh, and the shirt I made for myself on CafePress was a hit with all the doctors and nurses. :-)

Changing tense

Another post copied from my old blog:

Sunday, July 11, 2010

I've decided to change from "I have breast cancer" to "I HAD breast cancer". Even if it's not entirely accurate yet. Hey, it could be. Everything we know about has been cut out, so how do I know there are any microscopic cancer cells lingering? If there are, chemo & rads will kill them. Either way, cancer does not get to live here, and I'm not going to keep telling myself I have cancer. I did have it, but the eviction process is well underway.

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As of today, August 7, I'm not sure how successful I've been at changing my thinking to "had" instead of "have". But I keep trying.

Getting started - the synopsis

Before I start blogging my breast cancer/treatment/life stuff here, I wanted to copy over the posts I've made so far over at Sparkpeople, which is where I track my food intake more days than not. (I'm doing that not to try to lose weight at this time, but as an easy way to make sure I'm getting enough protein, calories and water during my chemo, all stressed to me as very important.) I hadn't been blogging regularly over there, but I started up in between my second surgery and beginning chemotherapy. So here's the first cancer-related post:

Monday, June 28, 2010

I've been negligent for awhile now. Last time I posted anything here was a couple of months ago...I was very excited to have found a Fluidity bar at a used sporting goods store. I managed to hurt my wrist loading it into the car, so I didn't put it to use, but I kept meaning to when my wrist got better.

Then I found an indentation in the side of my breast, and a week and a half later I had my diagnosis - cancer. I had a lumpectomy and sentinel node biopsy, and initially it looked like that would be it; but one of the margins was insufficient, and two of the nodes came back positive, so I had to go in for a second surgery. Fortunately the additional lymph nodes that were taken out were all negative, but I'm still recovering from that surgery. There is a lot of stiffness and so far a limited range of motion in that arm. I'm working on it though, stretching as I can without causing too much pain.

I start 20 weeks of chemo in mid-July. I wanted to come back to Sparkpeople and at least try to track my food so I can see at a glance that I'm getting enough good, nutritious veggies and fruits in, and not overeating comfort foods. This isn't the time to try to lose weight, but I hope to avoid the typical chemo weight gain at least. Overweight is a risk factor in cancer recurrence and I want to give myself the very best chance possible to live on disease-free.

I'm also hoping to find inspiration and motivation to exercise while undergoing chemo. I'm sure it will be difficult, too difficult on some days, but everything I read suggests that it will aid with my fatigue, improve my mood and possibly even my outcome.

I don't know how much I'll blog about this, but I want to try to get some of it down here. I know I've found reading about other breast cancer patients' experiences helpful, so maybe someone will be glad to read mine. And maybe one day I'll look back through old entries and be grateful to still be around. :-)