Sleeping like a baby...

Yesterday was the second Taxol treatment - or, all told, my sixth of 10 treatments overall.

Whoo-hoo!!  Not only am I over half-way done, I'm officially on the downward slide.  Six down, four more to go!

It's a good feeling to be on this side of the mountain.  It's like running downhill, picking up speed as I go.  Every treatment is not just one step closer, it's leaps and bounds closer to being done.

Second Taxol treatment brought no ill effects or reactions during treatment.  As usual they start with Zantac and Ativan, then load me up with Benadryl.  That is the beauty of the Taxol treatment - three hours of sleep.  I wait until they start the Taxol - still worried about the possibility of an allergic reaction.  But pretty quickly I realize I'm not itching, and I can still easily breathe, so it doesn't take much for me to fall asleep.  I awake a short time later and ask Ken for an yogurt - I realized I hadn't had breakfast yet - and promptly fall back to sleep.  When I awake about half an hour later there's a blueberry yogurt waiting for me.  I sit up, eat my breakfast, and realize I have about another hour and a half to go - so back to sleep it is.  I awake long enough to order lunch, pee, eat, and - surprise! - drop back off to sleep.  Shortly before the end of treatment I'm awake long enough to pull my stuff together and get ready to leave.

Taxol treatment is a beautiful thing.

Yesterday was the first treatment during which I did not cry.  I was not afraid, I was not worried - about the treatment, that is.  For the first time, I didn't kick (accidentally or otherwise) the nurse as she accessed my port.  I smiled, I laughed, I called the nurses by name.  Maybe it's because I knew I was going to be able to sleep for three hours, but in general yesterday was incredibly uneventful.

I was given steroids to take for the next three days to help with the potential pain side effect.  I took my steroid this morning, and then watched the clock at 4:35 - the time two weeks ago that the pain started.  When I got home from work at 5:30 I took a Vicodin - was told it was better to stay ahead of the pain rather than wait for it.  At 8:20 I am feeling no pain, no soreness, no awfulness - just a little tired, which is to be expected.  So, for now, I have hope that I won't have the same experience I had two weeks ago.  Keep your fingers crossed for groovy good feelings the next couple of days (and minimal steroid psychosis!)

If nothing else I had a chance to read the new Hollywood edition of Vanity Fair.  I found a new pair of Prada shoes that I will buy when I am done with treatment (never to wear, just to worship), and read about "7 for all mankind" that is "imagined and directed" by James Franco.  I learned that Ermenegildo Zenga's new men's suit is meant to be balled up in a corner and worn completely wrinkled.  And that Marc Jacob's new skirt-and-blouse looks like something I made in 7th grade Home Ec, with an elastic waistband!  And that pale skin is the new tan.

And that sleeping for three hours makes the day so very much better, when you have to sit in a chair with toxins pumping into your veins.  It would be so much better with a new pair of Prada shoes, though.

Still alive and kicking!

My mother called me this morning, very concerned.  She had my latest blog posting from several days ago, in which I described how toxic my relationship with Taxol had become (pun intended).  She hadn't read anything since then, and had called me a few times but I had yet to return her call.

She was, as any mother would likely be, very worried. 

When I write about my experience, it's not with the intention of being alarming or causing worry.  Writing helps me process all that's going on right now; it gets it out of my head and gives me a safe place to keep it.  Writing also makes this all so very real - something I still struggle with from time to time.  It allows me to "see" it, dissect it, explore it, and even experience it from a different perspective.  Writing is more than cathartic; it has become necessary for me to get through this. 

So I apologize if what I write is concerning or upsetting - that's never my intention.  I appreciate being able to be honest, to share, and to have you with me during this incredibly interesting journey. 

An update with a funny twist:

My Sunday was horrible, my Monday was bearable, my Tuesday was better.  Wednesday I went to work at usual, but by the end of the afternoon I could feel the utter exhaustion about to hit so I left a little early.  On the drive home I started to feel chilled (it was in the 80's that day), which worried me.  I got home and checked my temperature, which was 99.5.  Still not the magic number (100.5) at which point I need to call the doctor, but high for me (my normal temp is 97.7).  Checked it again a few more times then went to bed.

Thursday I woke feeling achy but still a little better than the previous day.  Temp was still at 99.5 but I had lunch with a friend and checked out wholly-unaffordable but mouth-watering deck furniture at Lowe's.  Still feeling achy and a little chilly I check my thermometer - 100.1.  I call my nurse and leave her a message that my temp is climbing.  I get home and check my temp again - 100.6.  I've finally surpassed that magic number!  Laurie returns my call and asks me to come in for some tests - between the pains, chills and fever, they're worried about a systemic infection.  I check my temp once more as I leave - 100.8. 

I arrive at the office to be poked and prodded.  Right off the bat they take my temperature - 98.6.  "Impossible!!" I cry.  "It was 100.8 just fifteen minutes ago!"  As I wait in an exam room for the doctor I pull out my thermometer and check my temp - 100.6.  I pull out the second thermometer I have and use it, too - 100.6.  When Laurie stops in to tell me my blood work looks great, I show her the thermometers.  She looks at them, then looks at me, then asks, "How much did you pay for these?" 

"Like, $3 I think."

"Throw them away," she says.  "Now's not the time to scrimp; go buy yourself an expensive thermometer."

My blood work revealed that my white blood cell count is much higher than normal (for me, that is); my bone marrow is expanding as my WBCs are growing, which is causing some of the bone pain and flu-like symptoms now.  It also explains a fever (if I really have one) - but it's not a problem.  Just another one of those "happy accidents" that comes along with Taxol.

The weekend has been wonderful - minimal pain but still some fatigue.  Ken and I finally celebrated his birthday yesterday at the DIA - he received his very own one-year membership so he can visit any time he likes, gets a free ticket to any special exhibits, and a mad discount at the cafe and gift shop!  I lasted about two hours before needing to leave - just got too tired.  Today I spent an hour or so in the garden, drinking in the sunshine and feeling alive and human again.  Peanut and I made cupcakes for Grandpa's birthday celebration, and we had a chance to meet S's new boyfriend.  Ken made lobster mac-and-cheese for dinner, and now we're (im)patiently awaiting the Season 5 premier of "Mad Men." 

I waited for that magic Day 9 to arrive, to start feeling normal again.  I am learning (as I do every time I have a treatment) that I can hope, but never predict, which days will be good and which days will be less-than-good.  The cumulative effects are becoming evident and I am coming to terms with that.  I'm getting used to being tired, to being able to do less than I used to, but I realize that's temporary and won't last forever.  I can get through this - I will get through this - because I have the courage to do so.  And I have the courage to do so because I have the support of so many wonderful and loving people.  

That wasn't a pothole, it was a sinkhole...

...into which I descended for the next 24 hours.  Two days later I am still slowly climbing back out of the pit.

Saturday was difficult, but Sunday was...unbearable.  The pain of Saturday had changed; no longer did I feel like I had worked out in the gym for hours and hours; now I could barely walk without wanting to collapse under my own weight.  The pain had left my upper body and was all pooled from the waist down.  Abdominal cramps reminded me of intense labor; back pain reminded me of, well, back labor.  My hips seemed to want to come apart, and my knees bent backwards, I swear.  Walking was more than a challenge, it became impossible at times.  Instead of enjoying the beautiful weather celebrating my husband's birthday, I spent the entire day in bed crying, cursing, bitching, complaining, crying, raging, and crying some more.  This didn't seem right, it certainly didn't seem fair, and I quickly realized that if this is what I would endure for the remaining five treatments, I would not be able to complete my chemo.

Ken finally convinced me to call the oncologist's office and leave a message.  Sure enough I received a call back a short time later.

"I'm in pain.  I mean, the last time I had this much pain I brought a baby home from the hospital.  I was told Taxol would be so much easier than AC - why do I hurt so much?"

"Have you taken anything for it?  Like Aleve or Motrin?"

"Well, yes, but it's not touching the pain, really...and I can't walk, I seriously had to crawl up the stairs earlier because my legs don't want to to work..."

"Most people don't have side effects like these.  You must just be one of those special people for whom Taxol is tougher."

(As a side note, if I haven't said it before:  I'm really tired of being special).

"So take more Aleve before bed, and call your clinical trial nurse tomorrow morning and let her know what's happened.  We'll give you more steroids next time, and maybe some pain medication.  You should start feeling better in a couple of days."

And that was that. 

So I took my Tylenol and a sleeping pill and crawled back into bed and prayed for sleep.  It came, in fits and starts, while the pain really conspired to keep me awake much of the night.  Surprisingly, I awoke on Monday feeling...well, better than Sunday, but still in pain.

The funny thing about pain is, when it starts to get better you assume you are getting better, so you go about your life again.  So I ate a handful of Tylenol and went to work.  On the way I called my clinical trial RN and explained what happened over the weekend.

Within three minutes, she had a prescription for Vicodin waiting for me at the doctor's office.  Bless my husband for picking it up and filling it for me, because by the time I got home I was about to crawl into the house again.

Today is better than yesterday.  I'm sure tomorrow will be better than today.  One of these days, I will feel "normal" again.

I developed a routine with AC that I can now throw out the window.  This treatment will not be a walk in the park, nor a vacation in Aruba.  It will be chemo, plain and simple.  And it will be cumulative, and it will suck, and I will hate every second of it.  But I'll continue, and finish, because that's what I need to do. 

In the meantime, if you see me and I'm cranky, just help me along with a little cheer:  "Stupid cancer."  That'll brighten my day considerably.

Hit a pothole on that downhill run...

Around 4:35 pm yesterday, the massive dose of steroids started to wear off.

How do I know this?  Because that's the time I got hit by the bus.

It started quietly - my throat hurt, like strep throat, all full and sore and hard to swallow.  A few minutes later my arms start to ache - like I had been pumping iron for hours.  Next, my legs start to burn, and finally my abs are on fire, making breathing painful.  I take my temperature, thinking maybe I've picked up the flu, but no, I'm actually subnormal.

Yes, there are SEs with Taxol, and apparently I've gotten them in spades.

Today is Ken's birthday - the 29th anniversary of his 29th birthday - and I am determined we're going to celebrate in style (I've been planning this birthday weekend for ages!)  I'm having trouble walking and I ache all over in a way I've never felt before, so Ken offers to drive me to school (of course I'm going to school - I may have cancer but I'm still an overachiever).  I've loaded up on Tylenol, which seems to help enough to get me through both classes.  We visit my parents and sister briefly, then come home, and I crawl back into bed and sleep for a couple of hours.  I wake and struggle to get out of bed.

I've been told by so many people that Taxol is much easier than AC; that it'll be like "a vacation in Aruba," that I'll feel close to normal again.  Well, I've never been to Aruba but guarantee you I'll never chose to vacation there, if this is what it's going to be like.  I had minimal SEs with AC, so I thought I'd skate through the Taxol with even fewer SEs.  No such luck.  I have to be the girl who gets it backwards.

This is what happens when you hit a pothole in the road - you get up, brush off your knees, hobble along a little bit, but keep moving forward.  It hurts a little but it's just a bump in the road.   Just a big ol' ugly, nasty, painful bump in the road. 

The Downhill Run

I'll admit - I'm a bit of a math geek.  I hated math as a child, but learned to love Algebra - and fractions - when I started to bake.  Kinda important when you're halving or doubling a recipe to know how to add those freaky, odd numbers.

Yesterday gave me another special appreciation of math, particularly these:

5/10  and 1/6

5/10ths can be reduced to...1/2, or .5, or 50%.  In plain English I have now completed 5 of my total of 10 chemo treatments.  I am halfway done,  50% of the way there!

1/6th can't be reduced, but doesn't really need to be - yesterday, I completed the first of my total of 6 Taxol treatments.  One down, five more to go!

We get to the center at 8:00 am.  Apparently, I am so excited to start treatment that I arrived 20 minutes early for my appointment, so we sit and wait for a little while.  Pre-treatment exam looked great - still haven't gained but two pounds total, all my counts (particularly my white cell count) are wonderful (they always sound surprised when they say that).  My red blood cell count is down a little, so I promised to eat a little red meat once in a while, and nosh on more spinach smoothies (not as bad as you might think, and I still have pounds of blueberries in the freezer to flavor them nicely!)  My Palmar-Plantar Erythrodysesthesia (PPE, or hand/foot syndrome) is healing nicely; the blisters on my left hand are doing well, and the tender skin areas are far less tender.  I still have numbness on my first two fingers, but even that is getting better slowly.

As a side note, my doctor had on the shortest dress I've ever seen, and yes, I am jealous.  Not only is she smart, she's also beautiful, and always makes fashion look easy. 

I have left the Red Devil (Adria) and Cytoxan behind, and have moved forward to Taxol.  I was more pre-tx afraid of the Taxol than I ever was of the AC, because there is a potential for allergic reactions with Taxol infusion:  itching, hives, chills, facial flushing, shortness of breath, and oh wait - stopping of the breathing.  So, as usual, I started to cry when I got to the infusion center, and as usual Julia (my favorite nurse ever) sits with me and holds my hand.  She shares that reactions are rare; they'll load me up with steroids and Benadryl to keep that from happening, and they'll watch me closely to ensure that everything is okay.  "But we'll give you some Ativan, just to help." 

How about a little extra today?  No?  Okay...

There are far fewer pre-meds with Taxol than with AC - in fact, no anti-nausea medications at all, as that is not a SE.  I can't complain, as those meds tend to bring with them really ugly constipation problems.  So I get my Ativan first (yeah!), then a good does of Benadryl...and I find myself quickly drifting in and out of nappiness.  Next comes 20 mgs of Decadron - the steroid - and I freak out a little:  During my first AC treatment they gave me 10 mg of Decadron, which produced a "galloping horses" heatbeat for a few days, so they reduced it to 5 mg after that.  And now you want to give me 20 mg?  God almightly, I'll be riding in a cattle drive across the West with all those steroids coursing through my veins.  But, it's important to have that dose - you know, the whole "not breathing" thing is more important than a few horses in my chest.

And finally - the Taxol.  Nothing red, no huge syringes - just a little bag of clear liquid hung on my pole.  Another way to lessen reactions is to deliver the drug slowly, so the Taxol will take 3 hours; if there's a reaction they can lengthen that to 4 hours.  I'm getting a "dose dense" treatment; typically Taxol is delivered once a week for 12 weeks; I am getting twice the dose, every two weeks, for 12 weeks (but only six actual treatments).  Twice the dose means a longer delivery time, and may mean some adjustment in pre-meds or delivery time.

So it starts...and I sit and wait for something epic to happen.  And I wait.  After about 5 minutes my nose itches, so I scratch it.  Minute later my arm itches, so I scratch it.  Then my leg.  My nurse comes over and asks if I'm "itchy," and I tell her I had to scratch a couple of places.  She immediately stops the treatment, and calls over another nurse.  They look at my face and determine my forehead is "pink" (thinking maybe I'm flushed), so they call the doctor.  She's there in a matter of seconds.  I mention I scratched an itch but don't feel "itchy" in general.  No hives.  And I'm not flushed, I'm just pink.  I tell her I'm willing to continue, and will certainly notify anyone if there are any other problems, so the drip is re-started.

Ten minutes later I am drifting off in my little chair, obviously still breathing, not itching anywhere, no pink or flushed face.  In fact, the worst problem of my day is that my head keeps sticking to the infusion chair (I chose to go topless in public!!) and so the nurse brings me a warm blanket to lay on the back of the chair.  After that, I drift back off to sleep for half an hour or so.  I wake and realize almost everyone around me has left.  Ken kindly runs down to the cafeteria and brings me lunch.  We chat, I drift in and out of sleepiness, and wake to a very loud and exciting game of cards being played by another couple down the row (he was there before I arrived, and he remained after I left - I have nothing to complain about!)

Finally, the Taxol is all delivered!!  My port is flushed with Heparin, which I can taste in the back of my mouth - and I cry just a little.  I realized this taste is the taste/smell I associate with the infusion center, with treatment, with all the icky and nasty stuff that happens here.  It is also very similar to the taste/smell that has happened during my post-AC days, when my mouth tastes like metal and my sense of smell changes to acrid and sharp and unpleasant odors. 

But now, I am done.  As we walk out and the sun warms my face and the breeze greets my bald head, I realize it's 2:00 - a 6-hour infusion day.  I go home and right to bed, and don't get back up again until 6:30.

It's done - the first Taxol.  The one I was most afraid of.  And nothing epic happened, nothing exciting or scary, nothing to be worried about.  This morning, I feel great - no steroid hang-over, no jitteriness, no horses galloping.  I don't have to take oral steroids for three days (as I did on AC; they were used to lengthen the effectiveness of the anti-nausea meds) so I won't have to deal with the sleep and mood issues.  It's like yesterday is over, and now I move forward with the next two weeks.

There are SEs with Taxol, to be certain - different than with AC.  My hair may continue to fall out, or it could start to grow back - only time will tell.  The worst SE is neuropathy in the hands and feet, which is usually short-term and dissipates after treatment ends. 

I'll deal with that if, and when, it happens.

When I (used to, but will again) run, I took a route that required me to run up a very short but very steep hill; at the top I would turn a corner and begin a slow, easy descent down to the end of my run.  I always said that downhill run was my reward for having made it up that difficult hill, and so I feel the same now about my final 5 treatments.  I made it through the first 4 toughest treatments, pushing myself all the way as I would have with that uphill run.  These 6 Taxol will be my reward for having made it through the worst of the worst, and while there are more of them, they're like a slow, downhill run with a reward at the end - being done.  And as with any run I've ever done on that route, I hate it when I'm running, but I never regret it when it's over. 

I never wish I hadn't done it.

Going topless

Ken and I had dinner with dear friends this weekend, and it was wonderful to be out and about.

I walked in the front door and announced that I was "going topless tonight."  Most of them looked shocked and horrified (really - the thought of seeing me without a shirt is that disturbing??) and then I whipped off my hat...

...and went bald in public for the first time.  And it was so liberating!!  What a great evening.

Somewhere in the middle

I find myself in an odd place these days.  It's like climbing to the apex of a roller coaster, only to discover that the chains are choked and you are stuck, right there, near the top but not over it, moving neither forward nor backward.  Just - there.

I really hate roller coasters.  And I'm frickin' terrified of heights.  What the hell am I doing here?

In the beginning there is lots of work to do - appointments and tests and plans and re-plans and organization and shopping and reaching out and reaching in.  And crying - crying takes a lot of work.  And talking - lots of work there, too.  These are the things that keep one occupied, keep one busy, keep one from thinking too much or sitting motionless, unable to move.  As minutes turned into hours, turned into days, even turned into weeks, I realized I talked less and cried more.  Not outwardly because, honestly, I don't want to upset those around me.  But then I can't really talk to myself anymore, either, because I'm pretty much sick and tired of being with me.  I'm kind of a downer sometimes, and if I were me, I'd rather be anywhere but listening to me.

It's not about depression or being sad.  It's the work that comes with change.  And change is really hard work, especially when it's not your choice.  Even the Buddha tells us that "Everything changes, nothing remains without change."  Life is all about change, every moment is a choice, and every choice leads to a new path and the potential for change.

But we are hardwired to be most secure in the Familiar.  So when something comes along that creates Change, we are thrown onto that roller coaster as we hope and pray for a safe return: to ride our roller coaster, but return back to the beginning, to where we began, to walk away from the experience but to leave any Change behind.

So I feel adrift, in some ways these days.  I'll never be able to go back, and I'm comfortable with that.  But forward movement - it feels like I'm stalled.  Chemo is exhausting; the cumulative effects are becoming debilitating and I pray this next med will alleviate some of that.  I can't run; yoga is out of the question right now.  I struggle to remind myself that what I'm doing is a good thing, a positive thing, a healthy thing (that's hard to acknowledge) because it will help me in the long run.  I feel guilty about being sick; I can't get over letting down fellow students when I can't keep up my end of the bargain in a group project, or needing to ask to leave early because I simply can't sit up any longer.  Or being late for work.  Or missing a family birthday party.  Or waking to find that I'm still here, talking to myself, really wishing I'd just go away and leave me alone for a while.

Living never wore one out so much as the effort not to live. - Anais Nin

One Hot Mama

I'm not a spring chick; at 48, I've had a couple of "hot flashes" in the last couple of years as my aging body prepares to give up the ability to bear children and start thinning my bones.  I was told that chemo would intensify my drive towards menopause (and the five years of Tamoxifen taken after chemo will completely induce menopause as a way to stop feeding the estrogen receptors in my tumor) so I was prepared for a hot flash or two, perhaps more frequently than before.

I was not prepared to have three very long, very sweaty, and very hot hot flashes last night.

Let me just say that my body apparently prefers to have hot flashes in the middle of the night - usually in the middle of a good dream (one of those dreams you can't go "back to" when it's time to fall asleep again).  For the first time, too, my hot flashes have been bad enough to bring along its favorite companion, Night Sweats.  I see lots of morning laundering happening in the near future.

Hot flashes sound innocuous enough, but for someone who's never had one, they're hard to explain.  I'm one of those "always-cold" people; hands and feet freezing, running through all the hot water in the tank before Ken can get a 30-second rinse-off in the morning, always layered so I'm not cold.  I always joked that I would welcome hot flashes, if for no other reason than I would finally be warm.

A hot flash, however, is less about being warm and more about being hot (hence the name).  This isn't August in Michigan hot; this is "I fell asleep in the sauna for an hour" hot.  It comes on rather suddenly, but I learned last night that it will wake me up to make me aware that it's coming so I can enjoy it in its entirety.  I realize I'm getting warm, so I stick my foot out from under the covers to help cool me off.  Then the other foot.  The covers are off my shoulders.  I get up to walk around.  Then I realize that I can feel the cold air on my skin, but that's as far as it goes - it stops right there, while the inside of my body is on fire.  It's like a furnace surrounded by ice, the two forces fighting each other for control.  The ice won't melt and let the heat out; the heat won't cool and let the ice in.  Instead, I lay there caught between hot and cold, heat and cool, wake and sleep, praying for patience and release.

And just as suddenly - it's gone.  And now I'm cold because the house is only set for 60 and I've stripped off just about every piece of (now damp) sleepware, and need to crawl back into bed and warm up. 

Only to do it again two hours later.

Being a woman is the gift that keeps on giving.

Party Time! Excellent!!

Yesterday was the milestone I have waited for for months - my final AC (Adriamycin and Cytoxan) treatment.  There were only 4, given every 2 weeks, which doesn't seem that long or hard.  But it is, trust me.

And now it's over with.

The Adriamycin was truly toxic, made me pee red/pink for a day and burned like hell, made my hair fall out, and sapped every ounce of energy and strength out of my body.  It gave me simultaneous bouts of diarrhea and constipation.  I was blessed that it never made me nauseous, gave me hand/foot disease (as it did with several of my co-chemo friends), nor seems to have affected my heart as much as I feared (I have not run in over three weeks, but that is more because I fear the germs at the gym).  Testing will reveal how much my heart has changed, if any, and we'll do those in a few weeks.  By then, though, I expect to be back outside and walking/running again soon.

During the first round of AC I started to feel "human" on Day 9.  The second round, it was Day 10.  I waited patiently during my third round, but didn't feel human again until Day 12 (and on Day 13 I steam-cleaned the dining room carpet).  I have been told the last of the AC will be out of my system in about 3-4 weeks and should be feeling so much better at that point.

Now I move on to 6 Taxol treatments.  As I mentioned a while ago Taxol is usually given once a week for 12 weeks; I am in a clinical trial that will give me "dose dense" (basically double-dose) Taxol once every two weeks for 12 weeks - 6 treatments vs. 12 treatments.  These are longer treatments - four hours for infusion, compared with the two hours I endured for the AC.  I don't have to take steroids with the Taxol, either (yippee!) so my sleep schedule and emotions should be more even-keeled.  And just because no one wants to disrupt my currently wonderful schedule, I will start Taxol in two weeks.  :-)

As I finished my AC yesterday and packed to leave, I gave a little cheer (the nurses around me cheered with me, too).  A woman behind me gave a little cheer, and said she did not miss her AC treatments at all.  We chatted for a moment; she's doing Taxol right now and says it's so much easier to bear.  She also pointed out she has peach fuzz growing on her head.  :-)  She has had none of the potential side effects (allergic reactions or neuropathy) and wished me luck.  We agreed to "meet again" in a couple of weeks and continue our conversation.

Back when I was first diagnosed I decided to treat myself to something I have always wanted, but never felt entitled to own:  a Pandora-esque bracelet (I only purchased it because I got an unheard-of discount at an Elder-Beerman after-holiday sale).  I started with two charms - a pink one for me, a blue one for Ken.  On the day of my first treatment, Ken presented me with a pink ribbon charm.  And last night he added to my bracelet in honor of the last of our Red Devil:

I hope to continue to add to this bracelet, but not just in honor of cancer milestones.  There are too many other things in life to celebrate and carry with me.