Posted: 1/11/2016
Wednesday, August 24, 2016
BoobNews: Tushies and Taxol edition
Posted: 12/29/2015
Short version: I've been getting my butt handed to me by AC chemo side-effects, but the new Taxol chemo seems better.
The last update from this intrepid explorer left us awaiting the last dose of the every-2-week (AC) chemo. It turned out to be much better than the previous week. My nurse practitioner had me dose myself with some medications and then also gave me IV fluids afterward, which ended up helping me to feel much better than I had expected, side-effect-wise. That was the good news. The bad news is that mid-chemo dose, we got a call from the pre-school. Asher was sick. My wonderful in-laws went and picked him up for us, and I later determined that he had hand, foot and mouth disease. That was Monday. The beginning of hell.
On Tuesday my compromised immune system gifted me with illness and I lolled on the couch, feeling puny all afternoon. By the time I crawled up to bed that night I was damp with fever. I woke up Wednesday morning feeling better and still didn't have any ill-feelings from the chemo. I was so excited! And then Thursday began the tushie trouble. I'll spare you the gory details because I'm a lady, damn it (see attached photo), but the summary is that side effects from the AC chemo created a chain reaction of side effects that ended with a constant pain level of about a 3 (on a 10-point scale), with occasional spikes of pain up to a 9 that would last the better part of an hour. A nine! I pride myself on being pretty tough, but this pain had me sheet-white and on the verge of tears. It was literally an enormous pain in the ass. It prevented me from walking, sitting, or sleeping well. It's now two weeks later. The constant pain is finally gone in just the last few days, and the intermittent pain level is down to a 5 or 6. So, progress, but not as fast as I'd like.
Meanwhile, I started my new chemo regimen of weekly Taxol yesterday.Matthew couldn't join me so my sister, Catherine, drove all the way out from Houston to take me since I wasn't sure if I'd be okay to drive afterward. We presented ourselves to the office at 9 am for the lab work and the office visit I always need to do before the chemo infusion.
Now, all morning I'd felt queasy. And the closer it got to chemo time, the more queasy I felt. Once I went back to talk to the NP they began to run down the long list of questions they ask each time. "Have you had any fever? Night sweats? Mouth sores? Numbness or tingling?" and on and on. "Any nausea?" I tell her that I haven't had any, except for this morning, but I'm sure it's just nerves before chemo. And now it was time to learn something new! She told me that anticipatory nausea is a real thing. I've begun to associate this process with negative feelings and so my body is having a stress response to it. It's rather Pavlovian. Except that instead of a bell causing a drooling dog, it's a drug causing a drooling bitch. Even the thought of the scent of the chemo I'd been getting will make me feel ill with a gross mouth-watery response at this point. So, more drugs to the rescue! I now have a prescription for Lorazepam to take before chemo each week. My nurse friends will recognize it as an anxiolytic, but apparently it has anti-nausea properties to it too, so it should be double boon. Huzzah! My bag o' drugs continues to grow.
And then it came time to actually get the Taxol. I got premedicated with a Benadryl mix first. And then I became conscious again about an hour later. That was just in time to verify the Taxol with the nurse so she could start it for me. Now, as I mentioned before, the AC chemo had a distinctive scent, and it would waft up from the tubing as it infused. No one else around me could smell it, but my med port is right under my face, so I'd spend half the hours-long infusion time trying to cover the smell with mints, hot chocolate, snacks. Anything to mask it. So, now it came time to hook up the Taxol. I tensed up and turned my face away, so my sister held my hand as I waited for the nauseating smell to slink its way onto my face. The nurse hooked up the tubing, flushed the line with saline (yep, there's that salt-water taste), started the Taxol and...nothing. No terrible smell, no awful taste in the back of my throat. It's a Christmas miracle!
We spent the next 2 hours watching a movie on my iPad and then it was done. We unhooked, took care of some scheduling for the future, had some lunch and went home. Granted, I passed out on the couch for a while (that Benadryl is effective stuff) but since then I've felt pretty good. My appetite is fine - shout out to Cyrus and his wife for providing our amazing post-chemo dinner last night - and the ill feelings that were usually starting by now with the AC chemo are still absent. The only thing I've noticed so far is feeling fuzzy-headed; it's definitely a little harder to focus than usual. That's probably hard to believe based on the dissertation I just wrote, but you'll just have to take my word for it.
So, hopefully this weekly chemo will be not too bad, which would be good because I have eleven more doses of it.
So for those of you keeping score, so far the thing that's kicked my ass the most in this whole adventure is...my own ass. Here's hoping I can get that straightened out soon. I'd like to start the new year focused on what's ahead, instead of what's behind me.
Posted: 12/8/2015
It's been a while since I updated so here's the (extensive) skinny. Short version: I'm bald, chemo blows, I'm almost to the next phase of it, and I'm not dead yet.
About 10 days after I buzzed my head, I got out of the shower to find that most of the 1/4 inch of hair growth I had was still hanging in there on the sides and back of my head. It was as dark and fluffy as always. But it had almost completely fallen out on the top. It looked like I had an extremely unattractive case of male-pattern baldness. All that remained was an amount of peach fuzz that wouldn't have even made a teenage boy proud. And I could feel it waving gently in the breeze as I walked. So weird feeling. So the razor blades came out, and I've now looked like Kilroy (see below) for a few weeks.
But fear not! Those random bastard chin hairs we're always fighting? (Ladies, you know the ones I mean.) Those are still in there trying to fight the good fight. Good to know some things never change.
Meanwhile, the every 2-week chemo schedule has been continuing. I've done three of the four sessions of those now. The good news is that it doesn't hurt. They use my port, which I numb first with Emla cream, to take blood and then give me my meds. The bad news is that it feels...weird. Unpleasantly weird. It creates turbulence in the large blood vessels in the middle of my chest, which is a very disconcerting feeling. At the same time, it makes my mouth water in that I-may-be-sick-soon way that your mouth sometimes does, while also creating a sour taste in the back of my throat. I'm finding the more times I go, the more I dread it.
The side effects of it haven't been too bad though until this past week. Usually, I would feel a little off on the Monday of chemo. Then Wednesday would be the worst, with enormous fatigue - even walking to the next room would wind me - and anything that brought on the fatigue would also cause nausea and lightheadedness and general feelings of awfulness. But then that would gradually improve over the next several days, so that by the weekend I felt fairly normal.
This last round was worse though. I was nauseated to the point of vomiting a few times (the first time that's happened) the Monday of chemo and felt fatigued and terrible all week. By the time the weekend rolled around I was a little better but not feeling normal yet. In fact, I wanted badly to go on a memorial motorcycle ride on Sunday for a friend who killed himself. I ended up having to ride on the back of my own bike because I wasn't strong enough to do it myself. Jeremiah is one of the few people I would pillion for, but it was discouraging to admit I couldn't ride on my own.
And now it's Tuesday. I was feeling better this morning. Yay! My plan to work tomorrow looked like it was going to happen. Yay! I took my oldest son out for breakfast before school this morning and had a nice meal with him. Yay! I had a nice little breakfast burrito. Not because I wanted one, mind you - my appetite has been disappearing - but because I knew I needed to eat something. Then it turned out that it gave me food poisoning. Are you f$^*ing kidding me? So now I've spent the day on the couch trying to not move so the stomach cramps don't flare up, and not being able to eat like I know I need to. Which means I'll probably be more tired and more easily fatigueable again tomorrow.
So, going to work gets pushed back at least one more day. And that bums me out. I like work! Going gives me a sense of normalcy and purpose. It saves some of my vacation time for later when I may need it more than now. I get to see my co-workers, whom I love. I get to see the babies and their families, whom I love. Well, most of the families...
But that's where I am right now. All of the exciting, fast-paced changes and updates are over for now. Now it's just the daily grind of suckitude. Every day when I wake up, I'm having to monitor myself. Do I have enough energy that I can drive the kids to school? Is that terrible feeling I have nausea or hunger? Or maybe it's heartburn? I need to figure it out so I know which med to take or maybe just eat something. Do I even have any appetite for that matter? Probably not. What can I make myself eat anyway? When everyone gets home, can I make anything for them to eat or will standing that long be too much?
It's nothing earth-shattering or terrible. It's just this ongoing feeling of being weak, or at least weakened, and I hate it. I'm not used to not knowing what my body can do on any given day. I'm not used to not being able to plan anything very well because I just don't know how I'll feel. I mean, I've been meaning to type this update for days but didn't have the energy. Granted, it's better than being dead. But still. Aggravating.
And on the topic of eating, the amazing Amy Sheinberg and S Van Lokey sent us an enormous and much-appreciated food care package, which we've been enjoying on some of my down days. And my wonderful in-laws, Chris and Terry Smithhave brought us food multiple times. And then my dear Katherine Mary Smith even set up a care calendar for me a while back.
I didn't publicize the care calendar because it meant admitting I might need some help and I felt like I didn't need help. And mostly I didn't really. But the time may be starting to come where I could use a little in the future. So I wanted to let people know that should you feel moved to (and PLEASE don't feel like anyone needs to, because I know about busy lives and obligations, and lord knows Bastrop is NOWHERE NEAR most of you, so seriously. Only if you really, really want to) you can let us know if you want to bring something by, by marking it on the calendar. It's at http://
Now that brings us to the future! One more round of the every-two weeks stuff to go on 12/14. Because of the cumulative nature of the chemo, I can look forward to feeling even crummier after the next round than I did this past time. But then on 12/28 I'll switch to weekly chemo with a different type of drug. Word on the street is that the fatigue will become ever-present, at an unknown level, but the rest of the side effects should go away. That's something to look forward to, at least.
To review the plan, it was:
Step 1: Portacath surgically implanted in my chest.
Step 2: 5 months total of chemo. I'll get a treatment every other Monday for 2 months. Then I'll switch to getting a treatment every week for 3 more months.
Step 3: Double mastectomy about a month after chemo finishes. Recovery from that will take about a month.
Step 4: After recovery from the mastectomy, 6 weeks of daily radiation treatments.
Step 5: Take an estrogen-blocking pill (tamoxifen) every day for 10 years.
Step 6: Not die.
That means I've completed Step 1, almost completed the first part of Step 2, and am continuing to do Step 6. And I suppose that's good enough for now.
BoobNews: "Hair we go!" edition
Posted: 12/8/2015
It's been a while since I updated so here's the (extensive) skinny. Short version: I'm bald, chemo blows, I'm almost to the next phase of it, and I'm not dead yet.
About 10 days after I buzzed my head, I got out of the shower to find that most of the 1/4 inch of hair growth I had was still hanging in there on the sides and back of my head. It was as dark and fluffy as always. But it had almost completely fallen out on the top. It looked like I had an extremely unattractive case of male-pattern baldness. All that remained was an amount of peach fuzz that wouldn't have even made a teenage boy proud. And I could feel it waving gently in the breeze as I walked. So weird feeling. So the razor blades came out, and I've now looked like Kilroy (see below) for a few weeks.
But fear not! Those random bastard chin hairs we're always fighting? (Ladies, you know the ones I mean.) Those are still in there trying to fight the good fight. Good to know some things never change.
Meanwhile, the every 2-week chemo schedule has been continuing. I've done three of the four sessions of those now. The good news is that it doesn't hurt. They use my port, which I numb first with Emla cream, to take blood and then give me my meds. The bad news is that it feels...weird. Unpleasantly weird. It creates turbulence in the large blood vessels in the middle of my chest, which is a very disconcerting feeling. At the same time, it makes my mouth water in that I-may-be-sick-soon way that your mouth sometimes does, while also creating a sour taste in the back of my throat. I'm finding the more times I go, the more I dread it.
The side effects of it haven't been too bad though until this past week. Usually, I would feel a little off on the Monday of chemo. Then Wednesday would be the worst, with enormous fatigue - even walking to the next room would wind me - and anything that brought on the fatigue would also cause nausea and lightheadedness and general feelings of awfulness. But then that would gradually improve over the next several days, so that by the weekend I felt fairly normal.
This last round was worse though. I was nauseated to the point of vomiting a few times (the first time that's happened) the Monday of chemo and felt fatigued and terrible all week. By the time the weekend rolled around I was a little better but not feeling normal yet. In fact, I wanted badly to go on a memorial motorcycle ride on Sunday for a friend who killed himself. I ended up having to ride on the back of my own bike because I wasn't strong enough to do it myself. Jeremiah is one of the few people I would pillion for, but it was discouraging to admit I couldn't ride on my own.
And now it's Tuesday. I was feeling better this morning. Yay! My plan to work tomorrow looked like it was going to happen. Yay! I took my oldest son out for breakfast before school this morning and had a nice meal with him. Yay! I had a nice little breakfast burrito. Not because I wanted one, mind you - my appetite has been disappearing - but because I knew I needed to eat something. Then it turned out that it gave me food poisoning. Are you f$^*ing kidding me? So now I've spent the day on the couch trying to not move so the stomach cramps don't flare up, and not being able to eat like I know I need to. Which means I'll probably be more tired and more easily fatigueable again tomorrow.
So, going to work gets pushed back at least one more day. And that bums me out. I like work! Going gives me a sense of normalcy and purpose. It saves some of my vacation time for later when I may need it more than now. I get to see my co-workers, whom I love. I get to see the babies and their families, whom I love. Well, most of the families...
But that's where I am right now. All of the exciting, fast-paced changes and updates are over for now. Now it's just the daily grind of suckitude. Every day when I wake up, I'm having to monitor myself. Do I have enough energy that I can drive the kids to school? Is that terrible feeling I have nausea or hunger? Or maybe it's heartburn? I need to figure it out so I know which med to take or maybe just eat something. Do I even have any appetite for that matter? Probably not. What can I make myself eat anyway? When everyone gets home, can I make anything for them to eat or will standing that long be too much?
It's nothing earth-shattering or terrible. It's just this ongoing feeling of being weak, or at least weakened, and I hate it. I'm not used to not knowing what my body can do on any given day. I'm not used to not being able to plan anything very well because I just don't know how I'll feel. I mean, I've been meaning to type this update for days but didn't have the energy. Granted, it's better than being dead. But still. Aggravating.
And on the topic of eating, the amazing Amy Sheinberg and S Van Lokey sent us an enormous and much-appreciated food care package, which we've been enjoying on some of my down days. And my wonderful in-laws, Chris and Terry Smithhave brought us food multiple times. And then my dear Katherine Mary Smith even set up a care calendar for me a while back.
I didn't publicize the care calendar because it meant admitting I might need some help and I felt like I didn't need help. And mostly I didn't really. But the time may be starting to come where I could use a little in the future. So I wanted to let people know that should you feel moved to (and PLEASE don't feel like anyone needs to, because I know about busy lives and obligations, and lord knows Bastrop is NOWHERE NEAR most of you, so seriously. Only if you really, really want to) you can let us know if you want to bring something by, by marking it on the calendar. It's at http://
Now that brings us to the future! One more round of the every-two weeks stuff to go on 12/14. Because of the cumulative nature of the chemo, I can look forward to feeling even crummier after the next round than I did this past time. But then on 12/28 I'll switch to weekly chemo with a different type of drug. Word on the street is that the fatigue will become ever-present, at an unknown level, but the rest of the side effects should go away. That's something to look forward to, at least.
To review the plan, it was:
Step 1: Portacath surgically implanted in my chest.
Step 2: 5 months total of chemo. I'll get a treatment every other Monday for 2 months. Then I'll switch to getting a treatment every week for 3 more months.
Step 3: Double mastectomy about a month after chemo finishes. Recovery from that will take about a month.
Step 4: After recovery from the mastectomy, 6 weeks of daily radiation treatments.
Step 5: Take an estrogen-blocking pill (tamoxifen) every day for 10 years.
Step 6: Not die.
That means I've completed Step 1, almost completed the first part of Step 2, and am continuing to do Step 6. And I suppose that's good enough for now.
Posted: 11/12/2015
Inspired by Cristina's haircut suggestion and Alicia's bad-assery: I'm now heavily asymmetrical and purple. I also want to thank Clint and Payne at Ulta in Bastrop for making me feel good today!
https://www.facebook.com/dulcenea/videos/10156274383670650/
Below photos taken during chemo on 11/16/2015, courtesy of Dalton Campbell Photography...
Inspired by Cristina's haircut suggestion and Alicia's bad-assery: I'm now heavily asymmetrical and purple. I also want to thank Clint and Payne at Ulta in Bastrop for making me feel good today!
https://www.facebook.com/dulcenea/videos/10156274383670650/
Below photos taken during chemo on 11/16/2015, courtesy of Dalton Campbell Photography...
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