Daisypath Anniversary tickers

Daisypath Anniversary tickers

Friday, July 31, 2009

Going Under Again

Plummeting again.

Looks like I'll surface for a day or two each week but it seems this is just going to be a rough journey until I get done with chemo. I do get a couple of decent days a week -- one that I spend in the infusion chair and one that I use to do everything I can't do the rest of the week. I enjoy those days completely! but you can see that it means I also have little free time!

I rarely (read: pretty much never) have the emotional or physical energy to answer individual emails in a timely way but they are very much appreciated. I'll reply as I can (about a 2 week delay right now) but because of pain involved in sitting at a computer, email is difficult for me and is way down my priority list. I do try to read personal incoming mail often and am very grateful for all your thoughts and love; I just can't tolerate the pain involved in replying to more than a few emails a week.

If you have routine questions, look here for answers; I'm not likely to email with information that's already posted. Phone calls are easier and always welcome if you're so inclined or if you need immediate information. No exceptions, sorry!

I know you understand!

We are having a mild and lovely summer and it's been wonderful!

For now... good night.

PS I'm always looking for the amusing parts of this experience. The most recent is that my hair is regrowing a little -- stick straight and solid white! Huh?! What can I do but laugh!?

Tuesday, July 28, 2009

Still Kickin'

Thanks for the recent emails and calls, wondering where I am... I didn't realize it has been so long since I posted. I appreciate everyone's concern. It's hard to stay in touch when I'm feeling low, so I appreciate when you reach out... it was good to hear from everyone. I'll try to catch up with individual replies soon!

I'm OK. Not great, but OK. The first couple of weeks on Taxol I felt like I'd been hit by a Mac truck and I got pretty discouraged and frustrated trying to deal with the pain.

The script pain meds they gave me for the pain knock me out but I take them at night so I can sleep... and it's a good, restful sleep, not a drugged-up groggy sleep, so that part works out well. For during the day, I've come up with my own plan: as much walking as my body will let me do (which isn't a lot, but moving and being out in nature feels good, no matter how short a distance or how slowly I move!), plus a bit of stretching and a bit of yoga. Meditation, too, when I can do that.

Sitting is the worst thing for the pain so work aggravates it but as soon as I get off, I start moving around, meditating, etc.

Seems to be doing the trick. This third treatment was much more tolerable, with the pain kept down to a bearable level.

The bad news is (hey, there had to be a flip side -- every time I start to get up, I get clobbered by that durn 2x4 again!) :) neuropathy is rearing its very ugly head. This is one of the side effects I've been dreading the most. I'm taking large doses of B6, B12, and l-glutamine -- no definitive evidence that any of those help, but there is some evidence that they may help, and they won't hurt. And of course I'm avoiding the things that can make neuropathy worse.

And I'm thinking lots of positive thoughts! (thanks, friend!)

Most people will recover from neuropathy within a few months of discontinuing chemo, but it's not unusual for it to last several months or years. In rare cases it's permanent. I know one woman, a PhD, who is facing permanent disability because she can't work in her field -- or much of any field. What do you do when your fine motor skills are gone? I can't imagine not being able to type, knit, button buttons, turn a key in a lock, sign my name... but these are all things that happen with neuropathy. They happened to mom (but not from Taxol); fortunately, by the time her neuropathy appeared, she was done with the chemo that was causing it. And because she was done with that chemo, her body was able to start healing immediately.

Fatigue is with me but my afternoon naps (1-3 hours!) and a long night's sleep keep me doing pretty well with that. I wear out easily but I also can function without feeling like I'm moving through molasses all the time. I actually had a couple of hours Friday where I just felt -- almost normal! It was amazing! It's good to be able to enjoy activities, being out and moving around, etc.; it's nice to just chat with someone without it draining me of what little I have.

Of course, the chemo caught up with me Saturday and I slept a lot over the weekend, but it was OK.

Now to just get rid of this tingling in my fingers.

I have 9 more treatments to go. I'm being monitored closely.

On with the show!

Saturday, July 18, 2009

Keep on Truckin'

The people who assured me Taxol would be easier than Adriamycin/Cytoxan meant well, I'm sure, and were sincere.

But "easier" is a relative term, and in my case, I think rather than "easier," I'd say, "different." And, of course, everyone is different in the side effects they get from any drug, so no one really knew how I would react.

If I didn't have the severe muscle pain, I'd be a pretty happy camper. Fatigue is an old friend at this point, and not as bad as with the A/C (at least not yet!), so that I can deal with. And so far, none of the other nasty side effects of Taxol are causing big issues.

But, the muscle pains are back this week and started a day earlier than last week. I was prepared but Tylenol is of no help (and how much do I really want to risk liver damage? My cells are already being attacked by poison -- do I need to add acetaminophen to that? Certainly not if it doesn't help!). I have a prescription med which does dull the pain but also knocks me out, so it's useful at night but not during the day.

In other words, I can get relief to sleep at night (for which I'm very grateful!), but I'm going to be in significant pain for five out of seven days for the next 11 weeks if we can't find something else for the pain. I'll talk to them again this coming week and see what my other options are.

Definitely not a walk in the park! But I keep putting one foot in front of the other... I'll get there!

Wednesday, July 15, 2009

Treatment Six, Done!

Six out of sixteen finished. Hurrah!

However, it was an anxiety-ridden day. I won't go into all details but I had a couple of side effects today that caused a lot of concern... one is to be watched but is probably OK. The second warrants a CTscan first thing tomorrow morning to rule out a blood clot in my chest. Again, probably OK, probably just side effects of the whole chemo thing, but still, it's a bit unnerving to have a nurse look at the base of your neck and say, "My, is that swelling normally there?"


At least they're staying on top of things and ruling out worst-case possibilities.

Still.... just when I thought I was free of some of extra stress for a few days, whammo!

Chemo..... still.... SUCKS!


Thursday, testing update:

No blood clots! Hurrah! Steroids to be cut in half (they're in the pre-chemo drip for nausea) to see if that still holds nausea at bay and keeps the swelling from becoming a huge (ha ha, get it, huge, swelling?) problem. Wish me luck!

Tuesday, July 14, 2009

Happy Dance!

1. Aches are better. Not gone, but better.

Just in time for chemo tomorrow, and round 2 of the aches :)

2. Mugascan came back OK! It only would have taken a drop of 2 percentage points for me to lose my chance to start Herceptin tomorrow (and therefore seriously impact my prognosis). I didn't realize quite how worried I was about this until they called me, gave me the good news, we hung up, and I started crying with relief.

Happy dance!

Monday, July 13, 2009

Chemo is my Friend. Chemo is my Friend. Chemo is my Friend.


Chemo sucks.

Pain sucks.

Crying sucks.

Sunday, July 12, 2009

Walking in the Park

Well, if this (Taxol) is a walk in the park after the A/C, it must be Central Park at 3 AM on a weekend... 'cause I sure ain't having any fun, and I feel like I'm being mugged!

I did start to have a return of energy and was looking forward to what that would allow me to do without everything being a major project (like laundry -- it would be nice to be able to do two loads in one day. Like cleaning out my car. Hey, I'm not asking much!).

Then I got zapped by muscle aches. All over. Even my feet and ankles hurt, for crying out loud! Sitting and reading hurts. Knitting hurts. Walking really hurts. I got half way through the grocery store yesterday and had to fight back tears.

Still sleeping about 10-12 hours a night, but that's ok -- at least when I'm awake I can function without feeling like I'm moving through fog.

Chemo is my friend, but as I've said before and will continue to say, it sucks.

Meanwhile, I'm nervous about the results of my muga(heart)scan because I really, really need to be able to start Herceptin next week. Fairly important (critical) to prevent the cancer from returning and for my long-term prognosis. It won't take much damage to the heart muscle (from the A/C) to take Herceptin off my list for now, and that would be devastating. Keep your fingers crossed for me.

So, yeah, the fun continues.

The aches supposedly pass; the only question is when -- a day or two from now, or a month or so after the 12 weeks of Taxol is up, or sometime in between.

I want to be a strong spirit and fly through this but the truth is, it's more devastating on just about every level than I could have imagined, and it's hard, and it wears me down. The fatigue makes everything harder to deal with, from the obvious things, like pain, to the more subtle, like trying to maintain some emotional grounding. Most of the time I have my sense of humor and I know I've been lucky not to experience things worse than I have. And I'm so extremely, very grateful for those days when I wake up and feel some semblance of normalcy, where I can go to work and get up the stairs without feeling like I'm dragging a horse behind me, and still have energy leftover after work to enjoy the rest of the day. Those are the really good days! and I'm happy to have them. The rest, I remind myself, will pass... and I'll get on the other side of this.

Looks to be a beautiful day here. Think I'll pop some Tylenol and see if I can get a short walk in some where!

PM update:

Walk consisted of about 1/10th of a mile -- but I was around some flowers and took some pictures, so that was nice. The bottom of my feet hurt*, which I've learned is common, but it sure makes walking painful. If it doesn't go away soon I may have to see about something stronger than Tylenol although I've managed to avoid most scripts up to now, except for rare taking of atavan for nausea. Hate taking meds but don't like suffering, either.

*along with my back, legs, etc.

Tuesday, July 7, 2009

Isn't it Ironic?

Yep sir.

It's been weeks -- at least three that I'm sure of, and maybe longer -- since I didn't feel like taking a nap by noon.

So, today, hurrah! I actually got through the whole afternoon without feeling exhausted (let's ignore the fact that I spent it taking mom to the doctor for a routine appointment. At least I wasn't exhausted!). I'm not running in circles, but it's almost 7:30 PM and I'm awake and functioning! Woo hoo!

Of course... tomorrow I start Taxol (and Herceptin), the biggest side effect of which is fatigue.

Still, it's good to have one day before I get zapped again.

And I'm hoping what I keep hearing is really true: that the fatigue from T/H is no where near as overwhelming as the fatigue from the A/C.

I'm planning to get up early tomorrow to get in a walk before work. All signs point to yes! if I can get myself out of bed in time.

Wish me luck with the new treatment... 12 weeks to go!

Woo hoo!

Saturday, July 4, 2009

Appetite, Food, Fatigue, the Fourth, and a Spirit Lifter!

Appetite: still not there often, but I'm not nauseous most of the time, either, so I can at least eat. Which brings me to...

Food: most of which has no taste, and some of which tastes awful (like one of my fallback foods until recently -- cheese. It's not bland, like a lot of foods -- it truly tastes bad. Off my list for now!). However, my taste buds aren't dead, just selective. Cream of wheat, oatmeal, chocolate, cinnamon toast, some nuts and nut butters, and most fruits are a few of the foods that really taste good. Neighbors brought over kale from their garden so the other night I made rice, kale, and mango -- and it was the best meal I've had in weeks. My tongue was doing a happy dance to enjoy food so much!

Fatigue: what can I say. It's there all the time. If I get to work and run out of energy by the time I'm done, that's my day. Some days I have enough energy to do another project, like laundry or taking mom to the grocery. I still figure I'm due for a bit more rebound before I start Taxol and I'm trying to get up early enough to go for a walk before work (and before I run out of energy) but so far I haven't quite made it up that early. My biggest complaint is that the fatigue also pulls down my emotional energy... hard to keep the attitude up when I'm physically and emotionally drained. I keep plugging along and doing what I can.

The Fourth! Happy 4 of July, everyone! It's cloudy and gray and cool here -- actually, my kind of weather! but I know most people will be wishing for some sunshine for their holiday plans. Whatever the weather and where ever you are, enjoy!

And last, but definitely not least: a spirit lifter. A good friend -- probably the sweetest person I know -- came to visit yesterday and we got to spend some time talking and just catching up a little. It was wonderful to see her, and it boosted my spirits up as high as the fireworks! Thanks, sweetie, for making the trip, for the time together, and for all the hugs!

Happy, happy 4th!