Deep Breaths

Tomorrow is my lumpectomy, along with the biopsy of the sentinel and possibly other nodes.

The surgery doesn't worry me much.  I've been through harder.  Been through much harder recoveries, too.

Just hoping for good news on the biopsy results.  Fingers crossed!

See y'all on the flip side!

Do a Little Dance!

We cannot cure the world of sorrows,

but we can choose to live in joy.

Joseph Campbell

Of course, it's always easier to live in joy when there's some joy to share.  An update and the good news.

Recovery from chemo: I'm still trying to get through side effects of chemo but am making steady, if slow, progress -- and not complaining! It's only been a few weeks. I still have fatigue but not as bad, although most days I need a nap, if possible, and an early bedtime. Taste is coming back slowly but a lot still tastes funky. Neuropathy will be the slowest to go away and so far I still have pain and numbness, but at least it's not getting worse anymore! and I know the nerves are doing their work, slowly regenerating themselves. I need to do my work and be patient. Hair is still white, about 1/2" long, growing evenly over my head, and still stick straight.

Results from tests: My first hint of good news was when the oncologist couldn't find the tumor through a physical exam of my breast, but of course I wasn't about to leap to conclusions. I had to wait until I got all my test results back before I started breathing again.

And when I started breathing again, it was with some shock and surprise.

They could find no trace of cancer in my diagnostic mammogram and the MRI. 

Hurrah!

That was unexpected and wonderful news. My biggest hope when all this started was simply that the tumor would shrink. I never expected it to go away.

There can still be cancer cells present but that will be determined after surgery biopsy results. And the fact that the tumor vanished is incredibly good news.  All that nasty chemo did its job!  Good work, chemo!

Surgery: The confusing part in all this for me was suddenly having the option of a lumpectomy. All along I assumed (with pretty good reason) that my only option was mastectomy, and I did all my research and discussion with other women with that in mind. After surgical consults and long talks with my oncologist, a lumpectomy makes sense. Biopsy results of the breast tissue/lymph nodes may show the need for a mastectomy anyway but for now a lumpectomy is in order. Have to wait to hear back from the surgeon's office to determine scheduling of that.

Anyone who says sunshine brings happiness 
has never danced in the rain.

~Author Unknown

Let us dance in the sun, 
wearing wild flowers in our hair.

~Susan Polis Shute

To watch us dance is to hear our hearts speak.

~Hopi Indian Saying

And from here... We'll see what the biopsies show (so keep the good thoughts coming!).  Radiation is a strong possibility although that's not certain yet. I'll have a mastectomy if called for by the biopsy results but I'm well prepared for that at this point. I'll continue the one year of Herceptin and begin five years of estrogen-blocking pills soon.

So, all in all, good news, more joy, and definitely more hugs!  And more thank you's, so many of them to so many people -- thank you, all, for your thoughts, blessings, energy, prayers, hugs, phone calls, notes, and on and on -- you are all part of my happy dance, and I'm grateful for each and every thought and prayer, and for each and every one of you. It's definitely happy dance time -- at least on days I have the energy to do so!

The aim of life is to live,

and to live means to be aware:

joyously, drunkenly, serenely, divinely aware.

Henry Miller

Nothing like a little disco music to get your dance mojo going! :) Dig those funky outfits, and dance, dance, dance!

Joy and Hugs

A little celebratory music! First, a song to dance to... and second, music to hug to... Both things I feel like doing today (before my chemo crash this weekend -- but it's my last bad one -- and remember, that's good news!) (please be sure to read the post below this one for the good news!)

In the infamous words of Simon and Garfunkel's 59th St. Bridge Song....

Slow down, you move too fast.

You got to make the morning last.

Just kicking down the cobble stones.

Looking for fun and feelin' groovy.

Hello lamppost,

What cha knowing?

I've come to watch your flowers growing.

Ain't cha got no rhymes for me?

Doot-in' doo-doo,

Feelin' groovy.

Got no deeds to do,

No promises to keep.

I'm dappled and drowsy and ready to sleep.

Let the morning time drop all its petals on me.

Life, I love you,

All is groovy.

Now go out and hug someone!

Good News...

...she says, cautiously....

...but JOYFULLY!

 

Last Taxol was yesterday!  The oncologist says I've (the cancer) responded so well to the chemo that there's no need to tack that skipped Taxol onto next week.  That means no more chemo for the foreseeable future!

That's good news!

I had decided yesterday morning that if they wanted to add the skipped Taxol on next week, I could get through the pain, fatigue, and nausea... wouldn't like it, it would've been hard, but I could've done it.

But I don't need it.

That's good news!

I'll still have Herceptin for most of the next year, which is given like chemo (through my port) and used to fight cancer, but isn't chemo.  It's biological instead of chemical (if you don't know the difference, go back to 7th grade science class!) and doesn't have all the nasty kick-you-in-the-butt side effects that some chemos have.  Like Taxol has.

Which I'm DONE WITH!

And that's good news!

I'll have surgery (undetermined what kind yet) in the next few months.  Will know more, but not all, after some tests are run in the next few weeks.

Tests will be a piece of cake after this durn Taxol.

Which I'm DONE WITH!

And, yes:  that's good news!

Of course, I still have one really crappy, painful weekend ahead, but after I get through Monday, I'll be on the uphill swing and won't have to face these nasty side effects again.

Have you heard?  That's good news!

My neuropathy will start to heal instead of get worse.  My hair will continue to grow.  My energy will return -- maybe slowly, but it will be good!  My taste buds might even start to recognize food as something other than "ick."

All.... good news!!

And I don't want to get my hopes too high or assume anything, so I'm celebrating just what I know -- and what I know is good news.

No.

Not good news.

Great news.

Thank you, everyone, for helping me get this far, with your support and love.

Having you all on my team is the best news of all.

Some days the pain just kicks me around a little too much. Sundays are usually bad but yesterday was worse than usual -- probably, as with a few weeks ago, from not enough rest Saturday. I slept 14 hours straight Saturday night after only a relatively short nap that afternoon. I guess my body needs those longer Saturday naps. I have general body aches all over and can't get comfortable. As for the neuropathy, my right foot is very painful and all my fingers hurt, enough to make me cry on several occasions. I'll be glad when the chemo is done. I'm not sure, given how much pain I've been in this week, that they'll be able to tack the skipped chemo on next week -- will hopefully sort all that out this Wednesday. I want to think I'm strong enough to take the extra chemo but since every week is worse than the week before I'm just not sure. I'm reaching my limit for neuropathy pain especially.

Climb the mountains and get their good tidings.

Nature's peace will flow into you

as sunshine flows into trees.

The winds will blow their own freshness into you,

and the storms their energy,

while cares will drop off like autumn leaves.

John Muir

I'm still hanging in and hanging on. Nothing really new: still dealing with daily fatigue and daily pain from neuropathy. I'm also having nausea, which I thought I was past. But all side effects are tolerable although some days are more demanding of me than others. One or two more chemos and then onward and upward to the next steps. Hard to believe I'm at this stage after six months of being pumped full of helpful poisons!

In the meantime, I dream of the day I'll climb the mountains again and get their good tidings... and until I can do that, I find nature's peace everywhere, and let it flow into me...

Short Brief

I'm hanging in and hanging on.

No significant changes.

Neuropathy progresses but only slowly instead of with giant steps -- that's good.

Fatigue is also worse each weekend (and I pay with pain and more fatigue when I try to ignore it) but I can get through that.

The fun thing is watching my hair grow back in white. It's slow but even growth and I'm still getting a kick out of seeing what it's doing. White hair will be great!

I'm also enjoying the incredible fall weather we're having -- warm but not hot, dry air, cool nights, wonderful breezes... leaves showing the first color. It's lovely!



Happy almost autumn, everyone!

Snow on the Mountaintop

Hair regrowth: spiky and white. In other words, FUN!! I got SO tired of everyone saying, "Oh, your hair will grow back dark and curly!" As if I cared what the regrowth would be (I would and will take whatever I'm given!), and as if they could see the future. Or, maybe not intentionally but still arrogantly, as if their experience would automatically be mine. I always appreciate when people share their experience -- I like to know what others in my position have been through -- but that's all they and I can do. We can't assume that our experience will be someone else's. Because all too often, it isn't! There are many commonalities with others and those bond us -- and the differences are our own wonders and part of the individual journey we go through. My journey, at least at this moment, includes straight white hair!

My hair can still change, of course, and could still fall out from the Taxol, but I have to admit I'm liking it just fine the way it is... and am finding it very amusing! I had no white hair when this started, just some gray mixed in with still mostly brown -- the regrowth is great entertainment!

I'll really like it when there's enough snow to ski on!



Good news: only four treatments left! Woo hoo! It will be nice to put this phase behind me. The Taxol continues to be truly wicked. I continue to move through it.

Everything has its wonders,
even darkness and silence,
and I learn, whatever state I may be in,
therein to be content.
Helen Keller

Blessings and Enchantments

To the one who knows how to look and feel,

every moment of this free wandering life

is an enchantment.

~Alexandra David-Neel

Some of my enchantments for this day, this week:

The ability to get through another round of chemo, even with all the side effects. Each day is a day further along!

Good nurses, doctors, and staff that closely monitor every level of my well-being and respond immediately and accordingly.

The sight of white clouds backlit by the morning sun.

The calm of a walk in the woods and along the marsh, smelling earth-smells and seeing herons, egrets, and tree swallows.

A smile from a stranger.

A good book at bedtime.

A hug from a friend.

Connections with friends, letting me know they're thinking of me, even when it's hard for me to reply in kind.

Being able to type, to knit, to read... to do chores, to drive, to get to work... the smell of fresh-cut grass, of the air after a rain... the sound of bird song at dusk...

to walk, to see, to hear, to feel.

Summer of '09 Crash & Burn Tour, August 19 Show

Just a short update on this week:

I did get chemo this week (Treatment 6 of Taxol, 10 of all treatments total -- 5 Taxols to go). There are still are big concerns about my neuropathy -- the next two weeks will tell a lot. I'm on yet more meds (5 scripts, 5 OTC now; for me, that's huge); the latest med is to control the symptoms (but unfortunately not the progression) of the neuropathy. Would be nice to get relief from the pain, especially in my toes. Hurts constantly and sometimes significantly.

Tests showed no gout in my foot, but also no idea of why I have a swollen lump there. To be continued...

My chemo this week was at a 15% reduction from previous chemos. Let's hope that slows down or stops the progression of neuropathy!

No other new news. Taste is still wonky, Taxol still causing some body aches, still have tons of fatigue but at least I know the pattern and when my rest days/better days are, hair is still growing in white and spikey :)

Onward and upward...

No Chemo Chemo Day

Neuropathy has progressed too far too fast (mostly in the past week) so I was pulled off Taxol for today; my remaining six doses will be reduced as well. I've been assured this won't affect the outcome.

I did get the Herceptin (which is biological, not chemical, and doesn't have many side effects -- except potential heart damage, of course) (hey, it's got to be something!).

Part of me was relieved to skip Taxol today because, let's face it, I feel pretty darn awful and the pain gets old and I'm starting to limp.

Part of me was frustrated and discouraged to have treatment suspended and reduced.

The swelling on my foot (appeared yesterday) may be new damage related to my old sprain (ankle last spring) but will be watched closely (mostly by me) for redness, pain, more swelling. If it goes away, all's OK. If not, zip! I'll be back at the dr. to be checked for blood clots.

I really can't say I'm having much fun.

Too many straws on this camel's back.

Time to rest.

Glub Glub Glub

That's the sound of me surfacing and going under again :)

Quick update:

Neuropathy is progressing -- now it's in my toes. Started with slight tingling a week ago and has moved on to fairly constant pain in my toes. My fingers, at least, don't hurt -- just some numbness -- and I can still use them pretty well (my barometer is how well I knit and button buttons -- so far, so good!).

But the progression means they'll probably reduce my Taxol a little this week. There's a small buffer zone in the dosage amount so a slight reduction won't affect my prognosis.

Taste bud weirdness has also progressed to where most food is tasteless or tastes truly awful. Even water tastes funny. I put this experience in the same category as baldness: annoying and not my wish, but hardly the end of the world. There are things a lot worse!

Fatigue & pain holding about the same: Wednesdays (chemo day) and Fridays are good days. The other days hold varying amounts of pain/fatigue.

I think that's the big stuff. Thanks for the cards, emails, calls... you all are helping me though this, a step at a time!

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!?

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!

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!