Anne Mildred Diesslin

April 23, 1920 - December 18, 2009

Resiliency and Life

I've been able to share a lot of my own personal good news here lately, and I'm really happy that I've been able to do so.

I don't usually use this space for personal matters outside of my cancer.  It's not what I started this for and I didn't want to "muddy the waters;" I only intended this as a place for people to be able to find out how I'm doing when I wasn't able to do many emails.

However, I know many of you will want to know about this, and I haven't had a chance to contact all of you.

Mom's cancer has been catching up with her.  She's had an incredible journey and an amazing fight against something that would have put many people on their knees a long time ago.

But she's starting to fail, and last Friday we re-initiated hospice.

The short version is that she's very frail, weak, and having a hard time.  She has moments of great clarity and manages to find humor in situations even as she hurts and struggles.  She shows love and appreciation for having family around.   She's compliant and graceful as she enters this time of her life.

She may have hours and may have weeks.  The reality is probably somewhere in between. Those of us close to the situation don't see her doing well -- but we know how resilient she can be.

Mom is one of the most resilient people I've ever known, but even she has limits.

I can't help but think about the gifts we're given at times like this.  Although it's hard, and I sometimes have to say no to things I don't think I can do, I'm so glad for what I can do and share in.  I'm glad and grateful to be part of this.

I'm so grateful her grandchildren care and share everything they can: their time, their love, their hearts.  They've been incredible, and their love is a testament to her love for them all these years

I'm glad mom is so gracious and kind and gentle.  I've been with people who are dying before, and I was told by those who work with the dying, that the pure and best essence of a person comes out at this time.  And that's what I've seen.

It's so wonderful to see mom's purest love and spirit shining.

In a season of giving, no matter what your religous beliefs, I'm getting the ultimate gift.  Time with my mom, when it matters like no other time.

May you all have the best gifts of the season.

Seasonal Thoughts

There are many celebrations this season. To name a few:  Winter Solstice may be the oldest. It's also known as Yule, and it celebrates the shortest day and longest night of the year. Christmas is the Christian celebration of the birth of Jesus; Hanukkah, the Jewish festival of lights, marking the victory of the Maccabees over invaders who had desecrated their temple. Kwanzaa is a Swahili word that means "first" and signifies the first fruits of the harvest. Boxing Day (St. Stephen's Day), the day after Christmas, dates back to England when wealthy homeowners would give gifts to their servants and to the poor. 

A common thread through all of the celebrations of the season is giving and gratitude.  We all always have reasons to be grateful; this year I know I have some special reasons for being so.  And truthfully, just being alive seems reason enough.

Whatever your chosen way to celebrate this season, do it with the love and peace of the season, and the spirits of giving and gratitude.

And don't forget to throw in a little happy dance!


 

What is Christmas? It is tenderness for the past, courage for the present, hope for the future. It is a fervent wish that every cup may overflow with blessings rich and eternal,
and that every path may lead to peace.
~Agnes M. Pharo

Celebrate the happiness that friends are always giving,
make every day a holiday and celebrate just living!
~Amanda Bradley

Every piece of the universe, even the tiniest little snow crystal, matters somehow. I have a place in the pattern, and so do you…

~T.A. Barron

The circumstances of your life have uniquely qualified you to make a contribution. And if you don't make that contribution,
nobody else can make it.

~Rabbi Harold S. Kushner

In our deepest moments of struggle, frustration, fear, and confusion, we are being called upon to reach in and touch our hearts. Then, we will know what to do, what to say, how to be. What is right is always in our deepest heart of hearts. It is from the deepest part of our hearts that we are capable of reaching out and touching another human being.
It is, after all, one heart touching another heart.

~Roberta Sage Hamilton

I have found that among its other benefits,
giving liberates the soul of the giver.
~Maya Angelou

Don't spend your precious time asking 'Why isn't the world a better place?' It will only be time wasted. The question to ask is 'How can I make it better?'
To that there is an answer.
~Leo F. Buscaglia

What do we live for if not to make life less difficult for each other?

~Roger Bannister

 There is more hunger for love and appreciation in this world
than for bread.

~Mother Teresa

It is when you give of yourself that you truly give.

~Kahlil Gibran

It's not how much we give but how much love
we put into giving.

~Mother Teresa

There is a wonderful mythical law of nature that the three things we crave most in life -- happiness, freedom, and peace of mind -- are always attained
by giving them to someone else.
~Peyton Conway March

How do you say "thank you" for sunshine or health...for clear days or gentle rains...for happiness, joy or love? You say it by sharing what you have.
You say it by making the world a better place in which to live.

~Thomas D. Willhite

Do not wait for leaders; do it alone, person to person.
~Mother Teresa

When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy. When you are sorrowful look again in your heart, and you shall see that in truth you are weeping
for that which has been your delight.

~Kahlil Gibran

The best and most beautiful things in the world cannot be seen or even touched.

They must be felt with the heart.

~Helen Keller 1880-1968

And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential
is invisible to the eye.

~Antoine de Saint-Exupery 1900-1944

Catching Up

Just a few quick comments:

Radiation begins Tuesday, December 8 (mock run on Monday). By my calculations, it'll be over Jan. 15.  I have blue magic marker X's on my body as "tattoos" to help position me for zapping.  

I'm still running on the tired side but nothing like during chemo.

That's the big news. 

Otherwise, I'm still happy dancing! and still full of joy and gratitude.  Happy, merry, everyone!

Happy Dance, Shared

These people (some 200 of them) not only did a happy dance, but shared it with a surprised group of travelers... pure fun and joy, the true essence of happy dance! Get your smiles ready...

And the Beat Goes On

Biopsy results today:

NO cancer anywhere, in any tissue, no where, no how, nada, zip, zero, none!

That includes in all the breast tissue from the lumpectomy, and the 14 (yes, 14, count 'em!) lymph nodes the surgeon took in "a little extra tissue" around the sentinel node.

That was more than he meant to take (and more than he thought he took) and I would've rather not lost so many but you can't put 'em back now...

That puts me in a small group of 10% who have had this result.  The 10% the surgeon warned me about before my surgery ("only 10% of women come back with no cancer.  Just want you to be prepared.  But we'll do our best to get clean margins.")  

I was fine until about 24 hours before I was supposed to get my biopsy results, and then anxiety got the better of me.

And then, miracle of miracles, I am in that 10%.  I never expected that.

I'm really, deeply grateful. Especially for all of you who sent positive, healing energy out for me in any form.  Because I was too worn out, too overwhelmed, to do a lot of that myself as I've gone through the last 7 months, and I know good and well that it wasn't my good energy that helped me beat this. 

It was yours.

So thank you, everyone.  Words aren't enough.  My tears of joy aren't enough.  But I'm grateful from the deepest part of me.

I have a follow-up with the oncologist next week.  I will continue Herceptin (1 yr.) and sometime soon I'll start estrogen-blocking pills (5 yrs.).  Radiation is more of an unknown now that there is no cancer to radiate!  Dr. Harb and I will be discussing that, I'm sure, along with other things.

Meanwhile... git out yer dancin' shoes and do a little happy dance with me!

After the Dance

Surgery went fine.  One lymph node and some extra tissue taken in addition to the breast tissue.  Lymph node was clear.  Will get other biopsy results this Thursday (Nov. 5); keep your fingers crossed for clear margins!

I'm doing much better than I expected although I had increasing pain until Monday, when the drain was removed. Having it removed felt a lot like having skin pulled off (at least as I imagine that would feel) -- burning pain for several minutes -- I guess the tissue was starting to heal around it and my body didn't want to let go.  Ouch!  But the incisions are only tender, not painful, and healing well.

Fatigue is hitting me again but I plan to go back for a day of work, a day off (appointments instead on Thursday), and then one more day of work before the weekend.

Neuropathy is noticably better (yay!), taste buds still refuse to like fat (no cheese -- sheez!) but are otherwise doing better as well.

Wish me luck for the biopsy results, and thank you for the email, phone calls, etc.  Y'all hold me up!

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!

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?"

NO!

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!

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!

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

Nonetheless....

Chemo sucks.

Pain sucks.

Crying sucks.

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.

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!

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!

Creeping Along

Rebound is slow but I'm creeping along.

Fatigue is going to be, as I've mentioned before, a constant companion for some time to come. I still don't have the energy to go for a walk but I'm hoping that changes, and soon! I'm getting to work, at least, which is a huge improvement over last week! (However, it catches up with me regularly. Took another long nap today. Two weeks after chemo and I'm still dragging. Just need to get used to it).

Stomach still giving me mild nudges so I'm sticking with bland food and not much of it. Hurrah for cream of wheat! :)

Blood pressure still low, still off meds. Nice to not be taking any scripts!

Cooler temps moved in... ahhhhhhhh!

Happy Summer!

Roller Coaster Dip

Yesterday was a slightly improved day, so it follows that today was a down day. Up and down on the roller coaster. I wanted to go back to bed as soon as I got up. Took mom to the grocery, and by the time we got back and I was unloading the bags, I wanted to sit on the bottom step in the garage and cry. Just very low on energy, drained, and ready to curl up where I was.

Last night I was seriously nauseous for about 4 hours. Don't know what that was about (10 days after chemo??) but it was pretty unpleasant. Eating has been an issue for awhile anyway, and continues to be, but I figure that's par.

I got in a three-hour nap this afternoon but I still feel like I've been beat with a stick.

But tomorrow I'll be back on the top of the roller coaster, hands in the air, ready to ride!

Hopefully, my body will agree!

Rebound #4

I'm on my way back out of the trenches. Thursday was pretty bad (possibly one of my worst days), Friday there were signs of improvement, and today I had enough energy to do a load of laundry. That's major progress!

Of course I took a nap this afternoon, too :)

I'm amazed over and over, not only at the physical roller coaster and the paces I get put through with the chemo, but the emotional roller coaster as well.

Part and parcel of the journey.

Onward and upward!

Fool Me Four Times: I'm an Idiot

OK, loyal readers :)

Remember when I said I wouldn't be fooled again? I learned my lesson! I knew what was what! No more surprises!

Yeah, right.

Woke up today feeling pretty darn good, all things considered. Way less dizziness, no nausea, felt like I could go to work and be just fine!

Then, as before, I did a few quiet things, wrote an email. Stood up...

Major dizziness. Weak and wobbly.

Quick blood pressure check: 85/67. (And no, I haven't been taking my high bp meds lately, because it's been too low without them.)

NOT good. And once again, after thinking I'm OK, I feel like crap.

I'm going to work (at least I'll be out of the heat that way) and will wait for the dr.'s office to call me back.

I want to yell and cry and laugh (all of which I did, after calling a friend... thanks for listening, friend!!) :)

Yep, fool me four times. Shame on me.

PM update:

One liter of saline and an Aranesp shot (for low hemoglobin) (that was already scheduled for today) later, I'm still feeling like crap, but at least I feel like fortified crap :)

Oh, and I'm officially off my blood pressure meds. Considering I'm running 100/75 I think I'm good for now. When this chemo wears off my bp may go back up but I certainly don't need any help lowering it right now!

This is one night when I really would have given a lot to not have to fix my own dinner. Usually if I feel bad, I'm not hungry anyway, and making a piece of toast is easy. And when I'm feeling OK, I don't mind fixing dinner. But tonight I had enough of an appetite to want to eat something, but no energy to want to fix it. Salad it was -- got something in my stomach, anyway.

I did treat myself to a home-brewed glass of iced tea. I know I'm supposed to avoid caffeine most of the time but I decided this could be my exception for the week! And it tastes heavenly. Small pleasures... I'll take 'em!

Nothing to do with Cancer

It's 93, "feels like" 98.

(Or "RealFeel®" 100, depending on what weather website you use.)

Ah, the sultry Indiana summer nights.... just gotta love 'em!

:)

2 AM and Feeling Worse

I'm sure this is partly heat-related. I've had heat exhaustion (and heat stroke) in the past but not seriously for years and years; still, it's something I've always had to watch and the heat can knock me down as much as the flu. It's 2-something AM, 84 degrees in here (without a good wind, all the fans in the world can only move so much air into a room); I'm hot, sweaty, having intestinal cramps, diarrhea, and generally feeling worse instead of better. Trying to drink more fluids (more! how much more can I drink!) :) and hanging in there until I can get to the dr., out of the heat for a few hours, and get some saline into me.

If my stomach would calm down it would help but I'm doing all I can.

Sucks.



7 AM update.

• Stomach still upset, didn't sleep much from 2 AM on.
  
• Fatigue and dizziness playing havoc with my ability to move around.
• BUT -- it's down to 78 in my room -- ahhhh.... almost feels nippy :)
  

Crawling Along

My sleep:awake ratio has gone from about 5:1 to 2:1 -- vast improvement! (Or else the heat is keeping me from sleeping -- which probably is part of it!).

Now when I'm able to get up and down the stairs without getting dizzy, I'll feel like I'm looking at the beginning of the end of this last batch of A/C side effects.

A fellow traveler on this journey recently wrote me, "Anyone getting through A/C should get the Purple Heart or the Congressional Medal of Honor..I went through it and I do believe it was like crossing through into the bowels of hell..."

I wouldn't say it's quite that bad, but it's sure not fun, and I'm glad the worst of it is nearly behind me.

Thanks to everyone for compassion, contact, etc., etc. All received with a lot of gratitude!

PM Update:

• 90 in my room at 7:30 PM. Lovely. Should be down in the mid-80's in here around 3 this morning. And yes, I have fans going. I'm not telling how many :) I hate heat. Winter, hurry!
  
• I've gone through 96 ounces of water so far today and I'm still getting dehydrated, so I'm sure I'll get saline tomorrow. And that means I'll be in AC for a few hours. Hurrah!
  
• Also pretty dizzy. Hate that. Solution: don't move. (yeah, right!)
• Black is back under my eyes. The "heroin chic" look that we all aspire to :)
  

This, too, shall pass. Just feeling crappy while I'm waiting for that to happen. But hangin' in there!

In the Trenches

Down for the time being.

Yesterday wasn't bad but I crashed hard last night. Fatigue gaining on me (slept 16 of the last 19 hours). Nausea controllable, mostly keeping me from eating but that's OK for a few days. Swallowing problem semi-under control so I can keep my fluid intake up. Dizzy, lightheaded, weak. Blood pressure low, so skipping meds today.

My worst days seem to be Sun.-Wed. or so. Hoping to not miss too much work this time around but it's not looking good for tomorrow.

Hot and humid not helping but it could be worse.

When the fatigue hits it's really overwhelming. But I know it's just a question of doing what I can, keeping the dr. informed so they can help where they can, rolling with the punches, and doing what my body tells me it needs.

Which right now is rest, rest, rest. Even when I don't sleep, rest is good.

This will pass, and I'll be on to the next round!

A few chapters this time. I'll try to keep it short!


Chapter One: Chemo 4, Done!

A quick recap: I had my last does of Adriamycin/Cytoxan on Wed. Hurrah!! I have three weeks off (which will take me to the half-way point in my chemo!) and then leap into 12 solid weekly treatments of Taxol and Herceptin. The Herceptin will continue for a year.

That takes me to next fall and surgery, and possibly radiation.


Chapter Two: Side Effects from Chemo 4, So Far

I'm going through fatigue already, also a fair amount of nausea, but that's minor so far, just frequent and uncomfortable. Ginger helps lots, and I have meds for when it gets more pushy. Also getting steroid jitters -- not to where it gives me physical energy, just mental jitters and emotional something-that-I-can't-pin-down, enough to keep me from sleeping at night and add to the fatigue. Today's the last day of steroids so I should crash tomorrow. (I know I've said it before, but how can people stand to deliberately take steroids for long periods of time? Yuck! Can't tell you all the negative ways it makes me feel!)

I also talked to the NP about my trouble swallowing post-chemo; it doesn't last long (3-4 days), but it makes it hard to drink liquids (but not swallow food. Go figure). Anyway, after finding out the reasons for that, I think I have a solution for when it starts (probably Sunday), so that should help. Drinking my usual 96 ounces daily! There wouldn't be enough rest stops on the highway for me right now!

Side note on fatigue:

I found a nice explanation of fatigue: When you're tired from exertion, if you get enough sleep that night, you usually feel better the next day. With fatigue, you feel generally tired all the time and lose interest in people and the things you normally like to do.

Fatigue from treatment can appear suddenly and can be overwhelming. Rest doesn't ease fatigue and it can last for months after treatment ends.

I'm fortunate in that I don't have such strong symptoms all the time. But when I do, it is, indeed, overwhelming. Should be hitting that wall this weekend. The good news is, I know it'll pass!

And the really good news, no more A/C! Onward and upward!


Chapter Three: Woo Hoo! Just Call Me Baldie!

OK, it wasn't planned... but I got in the car yesterday to run errands and get my Neulasta shot, and my scarf was slipping and falling, and I was trying to fix it, and was getting all hot and my head was sweating, and I said, to heck with this! Off came the scarf and off I went! It's not an attractive look, for sure, but I don't care. I'm still me and if people don't like the way I look, too bad.

It feels SO much better than those hot scarves... the weather was just getting to be too warm for them. And it feels very freeing.

Bald is Beautiful! Or at least freeing!!


Chapter 4: PM Update

Ugh. Nausea all day. Controllable but uncomfortable. Can't eat except small amounts of bland, dry food. Oh boy! Haven't had nausea this fast with previous treatments. Well, ginger helps, and if that doesn't, the meds will.

The heat/humidity are going to make it tough to sleep tonight. Indiana summer!

But all this shall pass!

Live Long and Prosper!

Yes, a bit of humor and Trek geekiness* hit me while I was doing my usual chemo self-portrait today. I was dealing with a dichotomy: dreading the treatment (it may be like last time, it may be worse); and yet wanting to get through it (or rather, get through the next 10-12 days). Trying to accept the conflicting feelings, I suddenly saw my four fingers in the mirror and knew what I had to do!

Live long and prosper! A good slogan for anyone...

Today went fine, as treatment day always does. Tomorrow should be OK, too. After that, who knows! I anticipate I'll be wiped out over the weekend and for some days after, as always. With any luck it won't be any worse than last time, but whatever it is, I'll get through it.

The good news is... this is my last Adriamycin/Cytoxin! I start 12 weeks of Taxol and Herceptin on July 8. Herceptin for a year but that'll be nothing after what I've already had.

More minor good news... although my nails have stopped growing, they don't expect them to fall out, and I'm on some OTC meds to help make sure they don't when I start on Taxol.

Going to go read until I fall asleep and see what tomorrow brings! Thanks, as always (but I can never say it enough) to everyone who's stayed in touch through email and calls and sent me warm thoughts for today and every day. It helps, and it means the world to me.

Live long and prosper!

*If you're about to point out that my hand is facing the wrong way for the proper Vulcan salute, and that my thumb is in the wrong place, you're geekier than I am! :)

Constant Companion

Fatigue has become my constant companion. Some days I feel semi-lively for about half the day; some days I drag all day. Fortunately, my mind and spirits stay pretty lively most days, even if my body is tired.

All of it is something I can work through, more or less. It's not something that sleep helps, although sometimes resting for a short while (reading, whatever -- just not moving around and not doing anything that requires a lot of concentration or mental energy) helps me get at least a little boost back. Yesterday I just couldn't get energy going and I canceled plans to meet with a friend. But I can at least get up and go to work and that's good!

My biggest complaint about the constant fatigue is that by late afternoon/early evening, when I usually walk, I'm often too tired. Getting out in the woods, in the fresh air, and moving (even if slowly), is something that helps keep me grounded, so it's fairly important to me. Really important to me. And since fatigue is supposed to be a long-term side effect (at least until I'm done with the Taxol and probably for some weeks or months after that ends, or so I'm told), I have to find ways to work with it.

That is, as soon as I get through the next A/C blast! One thing at a time...

Countdown

I'm on the countdown to my last A/C treatment -- then three weeks off, then I begin Taxol. That will continue until sometime in the fall.

I'm still dealing with fatigue and lightheadedness but it's not anything that I can't function with, so I do.

(Or, to get rid of the double negatives: It's something I can function with, so I do). :)

Time to get caught up on work, chores, errands, etc., before I get zapped again. I'm getting a walk in about every other day, when I have the late-afternoon energy to get out.

Later!

Walk! I Went for a Walk!

I finally made it out for a walk, about 45 minutes worth of sweat and mosquitoes and humidity.

It was wonderful to be out again.

Seriously.

Can't remember the last time I enjoyed a hot, muggy walk so much. My ankle was fine, I got some good walking in, enjoyed the birds, the breeze, and most of all, feeling like a relatively normal person. Or at least more like me.

I'm still not back 100% but am much better, for which I'm very grateful.

Seem to alternate one day better, one day with a bit of backslide -- we'll see how I feel tomorrow.

The overall trend is positive.

Yay!

Rebound Time!

Eeeee ha! I'm back in the saddle!

Not running at full speed, but definitely on the go again.

No time to post, too much to do :)

See ya!

(OK, I'm a little tired today... but so much better that I'm not complaining. I'm taking it easy but still plan to walk later today!)

PM update: low energy today, got laundry done but never got up the "omph" to go for a walk. Soon!

Fool Me Once, OK; Fool Me Twice... OK. But Not Three Times!

I woke up this morning and felt... gosh, not bad!

Well, I've been down that road twice this week, only to find out, as I moved around, that I was lightheaded, etc., and landed back in the oncologist's office for fluids. And felt like heck.

Not gonna fool me a third time!

So I got up slowly, took my time seeing just how my body was reacting.

I'll be durned.

Right on cue, the second Saturday after treatment (just like the first two treatments), I really do feel better.

I'm not going to start marathon training today, but I'm really, really happy to feel so much better. May still be some roller coaster stuff but I finally feel like I'm in the clear and on my way to several days of feeling good!

I might get that weekend walk in after all!

Happy dance!

Two Steps Forward, One Step Back

Woke up this morning with the robins and felt... OK! It was early so I took my time getting going, enjoyed the cool air and the early morning bird song.

About the time I started getting ready for work, guess what.

Lightheaded again. And the leg wobbles, which were gone after several days of weakness, are back.

I'm not as bad as Wednesday, but still, not good, and my blood pressure is low at a time when it's normally a bit on the high side (first thing in the AM before I take my bp pill). So, at 9 I'll call the dr. and probably go back for more saline.

Meanwhile, I'll head to work. I worked yesterday and paid the price the rest of the day, and perhaps that's why I'm feeling lightheaded again today, so maybe I should be staying home, but I can't afford to miss any more hours than I've already missed this week. I'll move slowly, won't run up and down the stairs any more than I have to, and will stay seated at my computer as much as I can.

Overall, though, I see a trend in the right direction, and have very strong hopes to get out for a walk this weekend! My ankle is about 98% healed so I'm ready to give it a good test!

Just waiting for the rest of my body to agree.

PM update:

a tad dehydrated, hemoglobin is pretty low, and the dr.'s office hinted that perhaps I'm "doing too much." Yeah, working all of 6 hours this week and resting a lot is definitely overdoing! :) Anyway, got more saline, I'm stable, and just need to give the chemo more time to wear off. Because I guess 10 days wasn't enough this time. So, patience, patience, patience. My mind is ready to rock and roll but my body just isn't there yet.

One Day Closer to Feeling Better

Short update:

Got a liter of saline yesterday; got reminded that this is a hard chemo, to listen to my body, and rest, rest, rest (like I'm doing much else!); and was also told by a couple of different nurses that when my immune system hits the skids about day 7 after chemo, I'm probably going to feel my worst. Thus explaining my decline all week and my really horrible and worst day yesterday.

I'm still pretty tired and my stomach still doesn't feel normal, but so far (knock on wood!), no dizziness today; if there is I just go back for more saline. The chemo is competing hard with my best efforts to stay hydrated and all I can do is the best I can do.

I should be on the upswing now, though! I hope!

So that's it in a nutshell. Aiming for work today, at least a few hours. And lots of sleep. I take it when I can get it and when I'm awake, I'm awake; my sleep patterns are all wonkers but that's OK.

Thanks for your warm and compassionate messages -- they always boost my spirits!

One day closer to my rebound!

This SUCKS!

Pardon my French, but gosh darn it!! I woke up this morning and felt... better. Not great, not normal, not even good. But better.

Then I started moving around. Dizziness. Got worse the longer I was up. Blood pressure: about 90/70, pulse around 115. Not good.

This SUCKS.

Chemo ain't no sugar pill. For those who have asked, here are details on just what these poisons can do to your body: adriamycin and cytoxin.

Have the guts to read those? Not pretty, huh. Not fun to go through, either, let me assure you. And yes, of course they list all possible side effects, and most people only get some.

But you only have to get some to feel like you've been beat down with a brick. And the most common ones are the ones that are really difficult to deal with.

Being in the trenches isn't for sissies.

Meanwhile, I'm waiting for my oncologist to call. Probably dehydration, and an hour or two of saline and I'll be better. And yes, I've been trying to drink lots of water, but this happened last time, too (without the dizziness) and dehydration is always something I've been sensitive to.

But it's scary to have the dizziness. The fatigue and nausea, I understood. The dizziness is just scary.

I'll get through it.

A/C Treatment 3, Day 6

5 PM

Sorta progress: I took out my trash all the way to the garage and didn't feel like I had to lean on the wall all the way! Woo hoo! I think that might be good news. Sitting and reading, etc., even feels a little better -- until this afternoon, it did feel like a challenge, but now it's more like something I can enjoy for short periods of time. Hurrah!

Sorta not progress: appetite is gone, gone, gone. Not nausea so much as food has just totally lost its appeal and the idea of putting anything into my stomach is somewhat to very repulsive. Before this afternoon I was somewhat interested in food, just varied in my ability to tolerate it. Now my stomach says no!

At least I was able to eat some chicken broth and soda crackers earlier.

This, too, shall pass... and I'll be back kickin' in no time! (Hey, the spirit is mostly strong, even if the flesh is taking a break for a few days!).


AM Report:

Side effects for today:

Nausea (yep, it's back!) & no appetite (-8 pounds since last Wed.)
Physical fatigue & weakness
Throat infection (from lowered blood counts)
Mild muscle aches throughout body, back spasms
Some coughing

As unpleasant as those are, I know they'll pass. What bothers me most is the damage the adriamycin causes to my heart muscle. Very scary.

Last night we were treated to tornado warnings and about 6-7 hours of thunderstorms. Didn't help with sleep much but it finally died down after midnight some time.

Planned to try work today but getting up the stairs is still difficult (not to mention, nausea makes me want to stay low and quiet!) so I guess I'll give myself one more day off. Energy should start coming back soon!

Monday: Zonk!

Slept 14 hours last night. Some Neulasta aches but not bad. Nausea, mostly past? Hope so. Very weak and wobbly but hanging on. Skipping work today. I'm glad there are walls to lean against as I move around :)

Could be a whole lot worse, just not used to feeling this wiped out, and I want my energy back! It'll come.... this, too, shall pass....

Sunday, Short Update

5 PM
Following the pattern of my previous two treatments, I've gone downhill all weekend and feel, well, crappy, and that's being kind. As expected, this time the side effects are accelerated and worse than the first two times.Nausea is a frequent companion but soda crackers, scrambled eggs, whole grain toast, and some fresh fruit sits well. Go figure. Slept most of the day and am going back to bed now. Sounds pathetic, but there you go -- can't help it -- it's how I feel. Doubtful I will even attempt work tomorrow. Hopefully, as in the past, Monday/Tuesday will be my worst days and then I'll start to see the rebound. Don't want to see this last longer than it needs to!

A special hug to those who called me this weekend to check on me. Even when we didn't directly connect, I was touched by your concern and wrapped in your love. Thank you.


9 AM
Up, somewhat functional, still nauseous but still controllable, a lot more tired than yesterday, and the Neulasta is trying to kick my butt, but I can usually get those pains under control quickly, and it's a lovely day out, so all is well :)

Thank you to those who have checked on me regularly this weekend -- much appreciated! Good to have a hand to hold even if just over the phone for a minute or two. Helps lots.

Now go out and enjoy this day!

Yep, Crashing Early!

4:30 PM
Nausea is rolling in on regular waves but fortunately very mild and very controllable -- usually a soda cracker calms my stomach down and I've only done one-half an ativan today. Foods that appeal don't go with stomach upset, which is weird (chicken, rice, ugh; Mexican, sounds yummy!). But I'm eating mild and bland to be on the safe side. One ativan tonight before bed for sure!

Wobblies/weakness hanging in there but I'm OK. Headaches gone -- hurrah! -- either a side effect of the cytoxin or maybe the ativan, although the cytoxin is the more likely culprit.

Vitals good.

Sorry for all the details most readers probably aren't interested in, but this is helping me keep a journal of my reactions for future reference. Skim or ignore as you need!

11:oo AM
Up, wobbly, weak, keeping nausea under control, still dealing with slight headaches. Able to sit/lie down and read or rest but moving around more than to go to the bathroom is tiring. At least I have enough energy between naps to read or sit at the computer for a few minutes. Might watch a DVD if I think I can stay awake that long :) Lovely day out, a bit cloudy but not to warm or humid.


6:00 AM
The steroids messed with me just enough to keep my sleep patterns off and wake me up at odd hours; in spite of getting in what seems like plenty of sleep at times, I'm not getting physical energy from the steroids, so I'm officially crashed. Way more tired than I've experienced this early the last two times, but of course the cumulative effects would cause that. A bit wobbly on the legs, too, but my vitals are all normal and as long as I rest I'm OK. I'm taking preemptive anti-nausea meds because I'm having frequent enough nudges from my stomach that I don't want to wait until I'm actually nauseous and having to hold things back or worse. Not into that much self-punishment! Other than that, I'm doing OK. Since I'm alone for a few days I have a couple of friends calling from time to time (thank you!) to make sure I haven't sprained my ankle again :) Not sure it's necessary but it is comforting. No one in the neighborhood would think anything of it if they didn't see me emerge for a day or two.

Happy wedding day, G&K!!!! I know you aren't reading this today of all days but my thoughts are with you anyway!
For me... back to bed!

Crashing Early?

The effects of chemo are cumulative, of course... so I never know exactly what to expect, but today presumably is my steroid-induced energy day. We'll see. The steroids have been messing with my sleep patterns a bit more than usual so yesterday I was really tired and in bed and asleep by 6:30. Today I'm still feeling tired so unless my morning and almost-final dose of steroids kick in soon, I'm going to be sliding right into the fatigue I know I'll have for the next 10 days or so. That's ok --I can respect what my body's telling me and do what it needs. Sleep/rest is my friend! All those little chemo molecules running rampant in my body are chasing the cancer cells out!

One thing I'm really doing, not that I don't do it anyway, but I'm watching it more carefully this time: plenty of water! I'm a big water drinker anyway, but with the chemo I'm taking (and with any chemo, I understand), it's important to stay well-hydrated and flush things out. So I'm staying on top of that. Hopefully it'll keep my blood pressure and pulse more in line, too, and I won't need to go in for saline this time, but time will tell.

My immune system is crashing, too, and I expect throat infections again, but I have the meds for that, and the other important thing is staying away from crowds and people and using common sense so I don't pick up anything that causes other problems... and along those lines...

Really sorry I'll be missing my nephew's wedding this weekend -- I know they'll have a fantastic wedding with or without me, but from a selfish standpoint, I'll miss being there, sharing in the love and joy, missing a big moment in his life, and not being able to be with family and friends. Sending good wishes their way!

Happy weekend, everyone, every where!

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edited to add, 2:15 PM:

Yep, crashing early.

This is a day I'm supposed to have steroid energy. I'm sure I"ll be fine but I'm surprised at how awful I feel today. Left work an hour early, came home and crashed for a couple of hours; I'm heading out to the grocery for some comfort food to have on hand, and then I'm holing up for the weekend. I'm dealing with way more fatigue than I usually feel even by Monday, a very very slight headache that comes and goes (probably from the cytoxin), nausea nudging at the edges (but so far controllable). I'm almost too blasted tired to want to stand up.

I heard the third treatment was a doozy, just really didn't expect quite all this much this fast.

I'll be fine. I'll get through it. Just not having much fun! :)

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edited again, 4 PM

Took me over an hour to just pick up a few things at the grocery -- sloooow moving! Good news is, I did it! I'm still being nudged by nausea but think part of that may be lack of food in my stomach so I'm going to nibble on a soda cracker and see what that does.

Yeah, this is SO much more fun than going to my nephew's wedding.

NOT!

:)

Hanging in there...

Oh, and some good news: my ankle, while still swelling some, is way down on the pain. Hurrah! Should be back to normal right about the time I get really tired from the chemo! :)

Chemo Day -- Round Three, Done!

Today was round three of the adriamycin/cytoxin. It went fine; now to see what happens the next ten days or so... wish me luck.

At the moment I'm tired and wondering why I'm still up, so I think I'll put that wondering to bed. Literally.

G' night, all!

Chemo Day

Chemo tomorrow, Wednesday... just FYI.

Not dreading it but not looking forward to it, either, except in the sense that it will be 3 down and one to go for the A/C. Can't wait to be done with this bugger!

Hope all is well with y'all!

PS. Be forewarned: as soon as my scalp is smooth (which may be a few weeks) (right now it's part stubble, part partly-bald, part smooth), I'm planning on abandoning scarves, at least for some of my public appearances. They're just too hot and I'm tired of messing with them!

Tulip tree flower (Liriodendron tulipifera), Celery Bog, May 2009

Quick Update, Energy Week!

Just the highlights:

Blood pressure is back in the normal range since I've gone on a half-dose of lisinopril. Pulse is still a bit high but acceptable. The adriamycin has my heart working harder than it normally would so the meds seem necessary to keep things under control. I'm halfway through the adriamycin/cytoxin treatment -- will be glad when I'm past all that. I can take most of the side effects but don't like what it's doing to my heart.

I'm off ativan for now. After I got past the anxiety over my heart wonkies, I didn't need it, and prefer not to take it anyway, so that was an easy decision. It's there if I feel the need but I'm doing well without it.

Energy is great! Hurrah! Happy dance! I'm getting caught up on chores and errands and hope to get caught up on email before I get zapped again next week. During my energy periods I feel so good it's hard to believe I have cancer. In fact, for the last several months (including before my diagnosis, and with the exception of the chemo down-times), I feel better than I have in ages. Doesn't make sense, but I'm not complaining!

(free web photo)

Ankle still has some slight swelling and isn't letting me walk overly much, but I can get out in the woods for slow strolls, and that feels wonderful.

Weather has gone from pleasant spring temps to humid and hot. Ugh. Well, it is Indiana -- I'm glad we didn't get this a month earlier!

That's it from the flatlands!