Tired. You?

I don't want to sound ungrateful, hateful, or snippy for even a minute of this post, so if it comes across that way, I apologize in advance.  Several people a day ask me how I'm feeling.  The answer is always, "Tired."  The bone pain is gone and I haven't taken a pain pill since Monday.  I just can't bounce back from the fatigue this time.

I'm considering lying.  I could plaster on a fake smile and say, "I'm great!"  Nobody is making me feel like I need to do this, but I'm sick to death of hearing myself say I'm tired.  Almost as sick of saying I'm tired as I am of BEING tired.   Almost.

I am asleep, or at least horizontal, most every moment that I'm not at work.  That's why I'm not on Facebook much.  That's why I'm not blogging much.  I don't hurt right now and I'm not having any major issues.  I'm just tired, and I'm tired of being tired, and I'm tired of bitching about being tired of being tired.

How are you?

Saturday Morning

I think I'm happy that my chemo schedule has my most painful two days landing on the weekend.  Sure, nobody would plan to spend their days off in a chair hurting, but at least it's not cutting into my paycheck!  I started the day with my pain meds, Claritin (which is supposed to help with the bone pain but doesn't seem to) and Prevacid.  Let's get this party goin'.

Kevin is working a half-day today.  Thank goodness for his OT right now.  Yesterday, it was $400 shelled out to fix the air conditioner.  Who knows what it will be tomorrow, but I'm thankful we were able to get it fixed.  As is typical, though, we got it fixed yesterday and do not need it today.  I have the windows open and need a lap blanket.  LOL  It'll be there next week when we're back in the high 80s, though.

Yesterday was the first high school football game here in our little town.  The girls are both playing in marching band, and I was hoping to make at least the first half, but couldn't do it.  The game hadn't been going very long when one of our players was seriously hurt (ankle, I believe) as reported by Monica via text message.  It makes me sick to my stomach and my family is praying for a speedy recovery for him.

I was asleep by the time the girls came home at half-time, and our Tigers were winning 42-0.  LOL  I haven't heard the final score, but sheesh.  Our offense must have been getting tired.  The next couple of games are away, I believe, so maybe I'll feel better in time for the next home game.  If so, I'll go grab Mom and take her with me.  Unless we can lure dad there with false promises of tractors.

I'm out of nonsense to bore you with, now.  Carry on with your weekend.  If you need me, I won't be hard to find.  Check the recliner.

Tired

Well, unfortunately, I seem to be following the same pattern as last time.  That still doesn't mean it will be as bad, but if today is an indicator, things haven't changed much.

I started out fine.  It was actually a good day.  I felt fine and accomplished a lot.  Around 12:30, I started fading.  I had to stay at work until 2:30 because my appointment for my shot was at 3 and the Dr.'s office is between work and home.  I made it, but I was dragging butt by the time I left.

I got my shot (a 5 minute appointment) and headed home.  I got here, changed into shorts (oh yeah, have I mentioned our air conditioner isn't working?  Yay!) and collapsed int.he recliner.  I haven't moved since.  I am 100% out of energy.  This is day 2, which is the day that I fell asleep at 4:30 last time.  I've made it until 5, so that's an improvement.  LOL

My nurse advised me to take pain pills from the get-go tomorrow.  I'll have to start with Advil, so I can drive to work without the aid of narcotics.  We'll see if that helps head things off.  For now, I think I'll just sit here and see if a kid will bring me something to eat.

Chemo Day 6 of 8

I had an appointment with my oncologist yesterday.  I always have lab work and an appointment with her the day before chemo.  I really like her, and I trust her completely.  She's never been anything but honest and open with me.   However, I was in a foul mood when I got there yesterday, and it caused me to leave there mad at her.

I posted on Facebook that I could tell her that there is battery acid dripping from my eye sockets and my arms have fallen off, and she would smile, nod, and say sweetly, "Yes, you're doing great."  Normally, her positive attitude is what I need.  She is gentle and sweet and understanding.  I think the big ol' chip on my shoulder wanted her to say, "Wow, you're having a rough time, aren't you?  Here's a cookie."  LOL

The truth is, she really does think I'm doing very well, considering the side effects.  She sounds amazed every time she asks if I'm still working and I tell her that I am.  I keep saying that, if my job had better short-term disability pay, I'd take off until this was over.  The truth is, though, I'd be in a worse place, emotionally, if I was home all day feeding my pity party.  At least when I'm at work I am solving other people's problems and not thinking about my own.

Today is the day that I could have slept later.  However, Kevin is trying to get some overtime, so he was up early and the light shines in our room, so I was up by 4.  So much for sleeping in.  I have an appointment with the plastic surgeon (it takes fewer than 5 minutes for a tissue expander fill) and then I double back to this side of the state line for chemo.

Chemo day is a relaxing day.  Any side effects don't kick in for a couple of days, so it's not an uncomfortable experience in any way.  I can play on my computer and relax.  I can take lunch there if I choose, and they have a basket of snacks for those who find themselves hungry and ill prepared.  The nurses are caring and sweet and chatty and genuine.  I don't mind chemo day at all.

Three times, others have gone with me.  It was fun to have someone to visit with, although I always worry they'll be bored.  Kevin took reading material when he went, and my friends Brooke and Tammy each took a turn, hiding any boredom they experienced.

Kevin has planned an outing to Red Lobster for Sunday afternoon.  We don't eat out very often, and he wanted to treat us with some of his OT.  That is my incentive to not hurt so bad this time.  LOL  If it's as bad as last time, it'll just be him and the girls.  If I can do it, I'll be going along.  I LOVE Red Lobster.  Maybe I'll start taking pain pills now to make sure it doesn't get too bad.  I'm kidding, but I DO love those cheddar bay biscuits.

Wow, that turned into a rambling post.  When you wander around that much in a blog post, it's time to stop.

A Sense of Dread

Tomorrow is my blood work and Dr. appointment day.  Wednesday is my chemo day.  I noticed today that I am experiencing a sense of dread about this treatment.  That is new.  It's nagging at the back of my mind, and causing an uneasy feeling in the pit of my stomach.

Nothing about this cancer trip has been fun.  Nothing has caused joy and celebration.  Still, each treatment has been a step toward completion.  It has just been something that I do...a part of my schedule...no big deal.  Every other Wednesday, I go for chemo.

After the last time (my first Taxol treatment) causing such intense pain, though, I don't wanna go.  It could be completely different and not be so bad this time.  I realize this.  The first two A/C treatments were as expected, the third was a cake walk, and the fourth put me in the hospital.  That means that the first Taxol putting me down for 4 days does NOT mean the second one will.

It's such a short time.  The chemo portion of my treatment will all be over in 4-6 weeks.  I can do anything for 4-6 weeks.  I just don't like the feeling that it's leaving in my stomach.  I bet I'll feel a lot better when Wednesday comes and goes.  Once it's done, it's done.

You can't dread something that's over, right?  (:

I'm Still Here

I've gotten ribbed a bit for letting so much time pass between blog posts.  In the past, that was reason for a sigh of relief.  Now, it leaves distant friends and relatives wondering if I'm OK.  I'm OK.  I'm here.  I don't want to do multiple "downer" posts in a row, so I just left the blog dormant this week.

Honestly, I started feeling better on Wednesday.   I called it "narcotic-free Wednesday" because it was the first day in five that I hadn't needed pain pills.  The debilitating pain was gone by then, but I was still so flipping exhausted.  When Kevin got home at 4:30 on Wednesday, I was already asleep.  I slept until 3.  On Thursday and Friday, I fought the urge to lie down by avoiding the bedroom.  LOL

Today, I feel all right.  I woke early and paid bills.  If you can do THAT and not become depressed, you're doing all right.  Not only are we having record-high electric bills, cancer treatment doesn't come cheap.  We've met our max out of pocket, but there are still payments being made from arrangements before we hit that max.  I can see the light at the end of the tunnel, but to think this is going to start over at the first of the year is sort of depressing.  Let's not think about that.

I've missed enough work lately that my paycheck was the smallest it's been since I returned to work.  It was 2/3 the usual amount, actually.  Thanks to Kevin's pay increases (yes, plural!) over the last couple of weeks, we still had enough to pay all of our bills that are due.  That made me so happy.  When I sat down with the bills and my computer and checkbook, I figured I'd have to juggle.  Nope!

Back to me, I'm going to milk this weekend for all it's worth.  I have chemo again on Wednesday, and if it follows the same timing, the bone pain will settle in on Friday.  I'll enjoy not hurting until then, and try to stay awake until the sun goes down at night.

But no promises on that last part.  :)

Brief Update (Complaint Warning)

When I finished the A/C portion of my chemo and started Taxol, I was under the impression that it would be easier.  I got my first infusion on Thursday, and felt pretty darned good.  Friday, I went to work, still feeling good and thought I had it made.

After work, I had to stop for my Neulasta shot (it brings up my white count and is always 24 hours after chemo) and noticed, by the time I got there, that I was VERY tired.  Oh well.  I felt enough better that I may have overdone things a bit, and the weekend was here for me to recover.
 
Saturday, I was shocked at how badly my bone hurt.  Traditionally, Neulasta causes bone pain, but it's been very predictable for me.  I get the shot on day 2, and have pretty rough bone pain for 1 or 1 1/2 days around day 6.  This was much worse, and much sooner, so I did some research and realized that Taxol causes bone and joint pain, too.  Great.

Sunday was even worse, and by the afternoon, a fever had joined the party.  WooFreakinHoo.  Kevin called the on-call doctor (why do I never get sick during office hours?) and she told him to give me Tylenol and see if that brings it down.  It was too early for me to be nutropenic (super-low whites, which hospitalized me last time) from the chemo, so she was willing to give it time to work itself out.

The Tylenol slowly brought down the fever, which had reached 101.8 at it's highest.  With the fever down, we avoided a trip to the ER and I was told to go get blood drawn this morning.  I woke feeling like I'd been drug behind a horse through the desert like in an old western, but showered and managed to get to the car.  It was one of the few times ever that I was sorry to drive a standard transmission.  My legs were screaming.

My blood counts were OK, but they drew a couple more vials to do some cultures on.  I was then told to go home and rest.  I did, which I will regret greatly on payday, but the four hour nap sided with the fact that I needed it.

The chemocare page on Taxol says that the pain duration should be "a few days."  I am truly hoping that means I'll be able to tell a marked difference in the morning.  I have pain pills, but I'd rather not take them at work unless I have to.  I'd also like to be able to walk without wincing (and sometimes crying.)  Mom made dinner for my family tonight, or it would have been ramen for sure.

Here's to a better tomorrow.

A 100% Complaint-Free Post (I Promise!)

Good news is always welcome, but sometimes the timing is perfect.  This time, the timing was absolutely spot-on, considering what has transpired over the last couple of weeks.

Kevin was due for a raise on August 1, and got it.  (I don't think I mention often enough how much I love his job, but I love his job.)  That was great news, since my checks are suffering.  I just can't get 40 hour weeks in very often.  The news of his raise made me breath a little bit easier.  He had also bid on a different position, but we were just sitting on that, waiting to see what happened.

Well, he got the other position, and figured it would be a couple of weeks before the trickle-down training would find him in that new spot.  Nope.  He found out this week that he starts Monday!  Here are some things that make him (us) smile:

• The position means another (instant) raise, and a higher pay scale before topping out.
• It is much less physical, therefore easier on his beaten and achy body.
• The hours are 6:00-2:30.  These are Kevin's DREAM hours and made him nearly giddy.
• There is already talk of OT, which will be easier to do with the (physically) easier job, and will take some pressure off me when I'm not feeling well at work.
• In case you lost count, he has now received two raises in under two weeks.

The last few days, when something's going wrong or I feel crappy or emotionally down, I have the above list to make me feel better.  I am so thankful for a husband who works hard to keep us going.  Hell, I'm thankful for a husband willing to work, period!  And I am very thankful, every day, for Kevin's job.

Starting the Second Half

You know how, when you're watching a football game (I picture a high-school game here in our little town,) the team  heads to the locker room at half time?  If they have a rough first half, I imagine the coach tells them to pull it together and talks to them about the best way to turn it around.

If the team is winning when halftime gets here, they head to the locker room and talk about their strengths, how well they're doing, and how to keep the momentum rolling.  Of course, I've never been in a locker room during half-time of a football game, but this is what I expect.

Today, I start my "second half."  My body played a first half until the last couple of downs.  I had it pretty easy, looking like the star quarterback as I went through my first three treatments.  For my fourth treatment, though, cancer's team introduced some new players.  Big dudes from out of town.

My whites took a beating, leaving me in the hospital for three days.  My reds hit bottom, causing me to need a unit of blood.  I could do nothing more than come home from work and go straight to bed for over a week.  If my family wanted/needed something, they knew to come to my room.  It was a very depressing time.  Back to my football analogy, I was taking a beating and starting to feel like there was no way I could finish this game.

My whites bounced back over the weekend, though, and I felt better yesterday after receiving that unit of blood.  It's halftime, and I'm getting ready to start the second half.  Today is my first infusion of Taxol.  Most people who have had the Adriamycin/Cytoxan combo, and then had Taxol say that Taxol is the easier of the two.  I'm counting on that.  The coach is telling me that I'll get through this half with no problems, coming out the victor.

No matter what, the bell signalling the end of the game will ring on September 20.  Sure, I'll probably still need radiation, but chemo, as well as the assault on my white blood cells, will be over.  It feels good to say I'm halfway done.  Queue up the marching band and you guys go hit the concession stand and get a hot dog and a soda.  It's time for me to take the field for the second half.

Awake. Again.

This morning I will go get blood drawn to see if my counts are back to normal.  I went to work yesterday, acting like I suffer from  mysophobia and avoiding direct contact with everyone.  I hope I'm back in normal range or I'll be cancelling my plastic surgeon appointment and likely postponing chemo this week.

I feel OK, although very tired.  That makes me wonder if I'm still low.  The other troubling fact is that a lot of side effects that we'd gotten rid of have returned.  I've had a headache every day for a week, I cannot sleep through the night (with OR without medication,) and I'm moody as all get-out.  We've also now added night sweats to the mix, so I'm a real bundle of fun.

I woke this morning at 1:45 and tried for 45 minutes to go back to sleep.  I finally gave up, ate a bowl of cereal, showered, and paid some bills.  Even if my blood counts are back to normal, I don't see me making it 8 hours at work today.  I hate to be negative, but since I'll be leaving for 2 hours for my appointment, I'd have to stay until 3:30 or so, and I'm not sure how well that will mix with waking so early.

I do have enough built-in paranoia from the last Dr visit that I'm packing a small bag.  LOL  Poor Kevin had to log about 150 miles last Tuesday because I was admitted into the hospital with nothing other than what I had on.  I am sure they won't admit me this time, even if my counts are low, because I don't have a fever or any other symptoms.  If for some reason they do, however, my glasses, contact case, and phone charger will be in the car.

OK, 4:00.  That means Kevin will be waking soon and I can quit being so quiet.  I'm ready for work, so I only have to kill another half hour before leaving.  Phew.  It's already been a long day.

Home

They released me on Friday morning, and Kevin came to get me and bring me home.  The only thing that really concerns me is that I have NO idea if my whites are still climbing.  I just have to assume that they are.  I am pretty much on lock-down for the weekend, avoiding public places and close contact.

Monday morning, I'll go back to work, still avoiding close contact until Tuesday's blood work gets drawn.  I had accrued 28 hours of vacation time toward next year, and that will cover most of the 4 days I missed while in the hospital.  I'm thankful that those were available, but a bit scared to have my safety net gone.  This simply cannot happen again.  No problem.

The worst part so far is that it seems that all of the side effects from early on are back.  I have a nearly constant headache, I can't sleep, and I'm emotional as hell.  I had a really bad headache last night, so I took what felt like enough pills to drop an elephant, and was back up at 1:30.  *sigh*  I had been sleeping fine for a couple of weeks (without pills) before this setback.

Basically, I think the quarantine has afforded me too much time to think.  When I go to work tomorrow, I'll be busy, and that will help.  My blood work is set for 3 in the afternoon on  Tuesday, but I may see if I can go early so I can wait for the results.  If my whites aren't back in the normal range of 4.0 - 11.0, I have to cancel my plastic surgeon's appointment and my chemo on Thursday will likely be postponed.

I would think, after over a week on antibiotics, my counts will be fine.  However, I would have thought they'd climb higher than .7 after 4 days on IV antibiotics.  They were .6 on Tuesday .5 on Wednesday, .43 on Thursday, and .7 on Friday.  They can't tell if that was a "trend" toward upward numbers, or just a fluctuation.  They let me come home, though, because there was nothing they were doing there that I cannot do at home.

I'm home.  I figured the "I'm home" post would be happy and fun.  Call it lack of sleep, the headache, or the whiny state I'm in, but I missed that goal by a long shot.  My feelings are hurt by the slightest little thing, I'm exhausted, but need to expend energy in order to get more sleep.  For the first time in my life, I'm in the middle of a weekend that seems to be going on too long.  Sorry, my working friends.  I know that comes as a betrayal to you all.  I promise to be crabby about Monday like the rest of you.

Staying Another Day? Picture Time!

Since I'm here for another day, we'll explore my little corner of this fine establishment. (click on any image to make it larger.)  The first thing I noticed was that the ceiling tile right in the middle of the room was painted.  Not painted with an uplifting message like your OB/GYN office.  Nope.  Not like that at all:

What the heck, you ask?  I have no idea, but those not-drawn-to-scale animals have been keeping me company.

That first night I was here, Monica came with Kevin when he brought me the necessities for my unplanned stay.  She looked at the wall and said, "Is this a Catholic hospital?"  I told her that it was, and asked what made her ask.  She said, "Because of that cross, and that looks like an old clock from a church."

They are neither centered on the wall, nor are they hanging straight.  And bless Monica's heart, I still don't see what is "Catholic" about that clock.

Another thing to consider, if you wonder what amazing things abound in this room, is this:

I have, at my disposal, 24 hours a day, 7 days a week, a VCR!  Don't go hatin'.  You can't all be me.

This is my view, which reveals another section of this enormous hospital:

There is nothing wrong with this.  The problem is that pterodactyls keep flying by the window, scaring the CRAP out of me.  OK, maybe they're pigeons, but they look HUGE out of the corner of my eye.  One actually hit the window earlier, and I nearly soiled the bed.  TMI?  Too late.  You can't un-read something.

Finally, the giant gift bag that was dropped off by a mystery delivery lady yesterday.  Kevin stopped by after work and added to the bounty.  Even after I indulged in a bit of sweet/salty last night (potato chips and chocolate could join forces to rule the world,) all of this is still left:

It has been quite handy to have these items at my disposal, since a few of my meal choices have been questionable at best.  Mmmm.  Junk food.

OK, here's to going home tomorrow.  Here's to higher white cell counts.  Here's to a decent night's sleep.  Here's to potato chips and chocolate!  Oops.  How'd that one get in there?

The First 24

The first 24 hours in the hospital has been interesting.  They are all very nice here.  I'm not used to being in the hospital, so it's weird, but fine.  The doctor offered me a sleeping pill last night, and I refused.  I've been sleeping fine lately.  Apparently that doesn't transfer to a hospital room.  LOL  She asked today if I regretted refusing it, and I admitted that I did.  I'll take one tonight.

The nighttime nurses are sweet and good at what they do.  I call them Nighttime Ninja Nurses.  The NNNs come in, work by only the light coming in from the hallway, and are back out within five minutes.  I barely knew what was going on before they were gone.

My bed has a problem that causes it to lock sometimes.  The buttons won't do ANYTHING.  The day nurse yesterday knew how to fix it, so she showed Kevin.  I didn't pay attention.  Guess how much good it did me?  This morning, a maintenance guy came in and asked about it.  He said that the beds are getting older and need new chips inside.  They've been ordered but aren't here yet.  Then, he took his fist and hit the control panel!  It fixed it right up.  I laughed and told him that I remember fixing our TV that way when I was a kid.  He said, "So do I.  That's what made me try it the first time."

I slept from 9:30ish until 11:30, 12ish until the NNNs came in at 2, and 2:30 until 3:45.  I called Kevin at 4 (he was already on his way to work, making up time that he missed yesterday, poor guy) and then I tried to go back to sleep.  I was finally successful around 5...and then my cell phone alarm went off at 5:30!  What an idiot!  I forgot that I have it set to go off each weekday at 5:30.  It has been turned off now, for sure!

I told a couple of friends, via Skype, that I wish I had some chips and chocolate.  This afternoon, the nurses aid came in carrying a bag with three small bags of chips and 4 kinds of chocolate in it!  It turns out that my friends do not know this delivery person, and neither do I.  It's a friend of a friend who happens to work here and hooked me up.  It's not who you know, it's who is known by whom you know.  Or something like that.

I've found that some of the food is quite good, and some is not great.  Most of it has been edible, though.  Except the tomato soup.  Ick.  Still, it's overall better than most people describe hospital food, so I'll not complain.  I can't imagine feeding this many people.  Plus, I'm a lot less picky than most.

At one point today, two doctors came in with two shadows.  Students, maybe?  Anyway, as the oncologist was telling me that my white cells had dropped again overnight (I know, I know.  *sigh*) and I'd be here at least through tomorrow, and possibly Friday, she said, "The good news is, you've been afebrile for 24 hours."  My hearing isn't great.  I hear things wrong a LOT.  What I *heard* is, "You've been senile for 24 hours."  Before I could process that enough to be offended, she added, "So as long as the fever doesn't come back..."  That's when I realized what she had said.  PHEW!

My final story is about how I'm introduced as shifts change.  Each nurse is telling the incoming nurse that I'm an ideal patient, or the best patient on the floor, etc, and that I never ring my call button.  That's true, I haven't needed to.  However, do you know what kind of pressure that puts on me?  Holy moly!  What if I need something?  I'll damage my reputation!  LOL   Yes.  I'll push the button if I need something, but I'm ambulatory, so there isn't much that I could need that I cannot get for myself.