Thursday, August 25, 2011

Getting the outer bands of Hurricane Irene at the moment.

You know you're a cancer patient…….when you are happy that you GET to have chemo because your white blood cell count was high enough! 

Life is not about how fast you run or how high you climb but how well you bounce.  ~Vivian Komori

Well, I almost didn’t GET to have chemo yesterday because of my low blood counts.  It was actually supposed to be an “easy” day for me.  About every 3 weeks, they let me skip the doctor/ARNP visit (which adds a lot of time to the appointment….mostly waiting time) and just have the blood work and go directly to the chemo suite.  I usually have to wait about 10 minutes or so for the results of the blood work.  If everything looks good, they begin “the drip.”  So I was excited yesterday to have a “no-wait” day on my agenda…..until the nurse came over to my chemo chair and told me my numbers weren’t good, and they would have to talk to Dr. Sprawls to see if he wanted to proceed with the chemo.  Lovely.  It took an hour to get that authorization!  But he actually dropped whatever he was doing (seeing patients, keeping patients waiting, etc.) and came upstairs to the chemo suite to talk to me, which I thought was really nice.  My white count was 2.61.  My hemoglobin was low, too, at 9.97.  And my neutrophils and eosinophils were low, too.  He said I had “one toe over the line, but let’s keep going so we can get this over with.”  Can you believe I was excited to hear that?  Well, I’m just all for getting this crap over with.  HOWEVER, he also said that I should get a Neupogen injection (similar to the Neulasta injections I got after the A/C chemo regimen) to boost the blood counts.  So I will have that at 0800 tomorrow (oh joy) and more blood work on Monday morning at 0800 (oh joy) before Taxotere #8 (hopefully) on Wednesday morning. 

The next part of my “no-wait” day happened because Kenny actually dropped me off for my appointment so that he and his brother, Fred, could use the car for the morning.  I called Kenny at 1030 and told him I would be finished around 1130.  I called him at 1130 and told him I was finished, and he said they were getting stuff off the boat in Merritt Island!  So, an hour and 10 minutes later, they showed up to get me!  Good thing I had taken an anti-anxiety pill and had a good book of Sudoku puzzles with me!  So I just sat outside and didn’t even mind the wait!

After the guys picked me up, we went to the beach at Canaveral National Seashore because it was Fred’s last day in town.  It was really beautiful, although the surf was really ripping and churning due to the pre-Irene winds.  We enjoyed watching the surfers and having some solitude on the beach – it wasn’t very crowded at all, which was nice.  And, of course, we stopped at the tiki bar on the river on the way home.  The guys had a couple of drinks, and I had 3 glasses of ice water!  We went back to the RV, and Kenny took the dogs for a nice long walk since they had been cooped up for a good part of the day.  Fred and I went and took a dip in the pool, which felt great and was very enjoyable because there was nobody else in the pool.  After that, Fred treated us to a nice dinner at Paul’s Smokehouse, overlooking the Indian River in Titusville. 

The night before that, we had a really nice dinner at Atlantic Ocean Grille on the Cocoa Beach Pier.  It was Fred’s birthday, and we ended up with a great corner table by the window, overlooking the ocean – had a really nice meal with a great view, and they even brought Fred a free dessert.

Oh, I guess I haven’t posted on my blog since the guys made it down here with the boat.  Last time I posted, they were planning to anchor some place Monday night.  However, they decided to “keep chugging,” and they arrived at the marina in Merritt Island around 2130 on Monday night.  Very long day for them, but they were happy to get safely tied up and spend the night in the air-conditioned RV.  They had a good trip, overall, with a few “issues” that need to be dealt with – something with the stuffing box and some other engine things (that hopefully aren’t anything major).  The coolest thing about the whole trip is that they only burned 12 gallons of fuel from Jacksonville to Merritt Island (about 150 miles)!!  Now THAT really got my attention!!  I LIKE that!!

Our original plan was to put the boat in a marina here in Titusville for a month or so, so it would be convenient to use.  However, it’s not a very protected marina (from the weather), and on Monday it was looking like hurricane Irene was heading our way, so we needed a place with better protection.  We ended up putting it in the same marina we lived in when we lived on the houseboat for the last 5 years we owned it.  Very protected from the weather.  Just not as convenient to use.  But we’ll figure something out.

Sadly, Fred’s flight home was this morning.  It was nice having him down here, and I know we both really appreciated him coming down to help with the boat.  As luck would have it, as soon as he got back to Rhode Island, he had to pull his boat out of the water – a bit of a hassle – due to hurricane Irene heading to New England.  They actually pull the docks out of the water where he keeps his boat, so he had no choice but to pull it.   

We’re currently getting the outer bands of hurricane Irene – lots of rain and lots of wind – very squally, tropical weather.  But we’re counting our “lucky stars” that it looks like we’ll be spared the brunt of the hurricane.  Worried about our families up north, though.   

Well, I guess it’s about time for me to call it a day.  I slept terribly last night – tossed and turned most of the night – damn steroids.  I didn’t want to take a sleeping pill because I was afraid I would oversleep and the guys wouldn’t get up in time to get to the airport.  Sleeping pill tonight!  Hopefully I’ll wake up in time to go get my Neupogen injection – I’m so excited about that…..NOT!  I wonder what kind of side effects I can expect from that?!  Guess I’ll have to ask them tomorrow.  I’m not going to worry about it right now, though.  I’m going to go get me some much-needed sleep instead.

 

Monday, August 22, 2011

The boat is on its way!

You know you’re a cancer patient……when you are bald and have no eyebrows or eyelashes and people say, "You look good!"

I find that the great thing in this world is not so much where we stand, as in what direction we are moving.  – Oliver Wendell Holmes

I guess I’ve been kind of slacking off in posting on my blog.  Not too much to report really.  I did have Taxotere #6 – 6 down/6 to go – last Wednesday.  I saw Katie, the nurse practitioner, beforehand and she said to be sure to let her know if I experience the really severe abdominal pain.  Fortunately, I didn’t get the really bad stuff.  I had “waves” of severe abdominal pain off and on over the weekend, but they would usually only last about 10 seconds and then subside.  I would just grit my teeth and clench my fists and wait for the pain to go away.  Luckily it didn’t happen too often – maybe a total of 15-20 times between Friday and Monday.  Between that and feeling nauseous most of the weekend, I didn’t get much done.  I did go out to dinner with friends Friday night, which was fun and the highlight of my weekend.  I also had a bunch of extra transcription I had to do over the weekend because one of the nurse practitioners was almost 3 weeks behind, and she dumped it all in there this weekend.  Since I didn’t have any plans, and Ken and Fred were gone on the boat, I was able to get most of it done – in between naps, of course -- and with some help from my "girls."  Took a 3-hour nap on Saturday and a 2-hour nap on Sunday – and I’m already looking forward to a nap today.  Turning into such a lightweight.

Fred arrived Thursday afternoon.  I drove Ken over to the Orlando airport where he picked up a rental car and Fred.  As I was driving back from the airport, I was really glad that I decided not to drive them to Jacksonville – that we would get a rental car instead – because I was getting tired just in the 40 miles from Orlando.  We had a nice evening visiting with Fred.  Went to Paul’s Smokehouse (on the river) for dinner and then came back to the RV and chatted for awhile.  Ken and Fred got on the road to Jax around 8:30 Friday morning.  They made a couple of stops on the way but still got up there before noon.  They got the boat read for the big adventure, went and got groceries, returned the rental car, etc.  And they got underway Saturday morning at 0740.  The spent Saturday night at anchor somewhere a little south of St. Augustine.  They spent last night at anchor somewhere around Daytona, and they’re not sure where they’ll spend tonight.  They’re trying to make as much progress as they can so they can get back here and get the boat all tied up and secure – in time for Hurricane Irene!!  What timing!!  Geez!!  And we had hoped to take the boat out for a little cruise this weekend. 

I guess I don’t have much other news to report so I will post this on my blog.  Taxotere #7 is scheduled for Wednesday morning. 


Tuesday, August 16, 2011

Tomorrow is the halfway mark for Taxotere......

You know you’re a cancer patient when……. you stand out on the deck and watch a rotating thunderhead pass right over you because things that used to frighten you now just fill you with awe.

With ordinary talent and extraordinary perseverance, all things are attainable.  ~Thomas Foxwell Buxton

Just a quick note on the eve of Taxotere #6 (yup, the halfway mark of Taxotere) to let you know I’ve been feeling good.  I had a good weekend with just a few waves of abdominal pain – they were severe when they happened, but they only lasted seconds…..not days…..and I survived them without any problem.  In fact, I never even mentioned them to Ken (even though I almost drove off the road during one -- not really -- and he was in the passenger seat) because I didn’t want him to worry.
 
On Friday night, we went out for Mexican food with Debbie, Bill, and their friend, Frank, to celebrate Bill’s birthday.  It was actually a small surprise party for him, and all the people who work in his office and their friends were there, too.  It was pretty hilarious because, even after Bill saw them, he thought they were just coincidentally eating there, too!  He had no idea they were there for him!  It was a fun evening!

We went to the beach on Sunday afternoon and had a nice relaxing time there.  Went swimming and boogie boarding (didn’t even lose my foobs!), sat under the umbrella and people-watched for awhile.  On the way home, we stopped at Crackerjacks – the tiki bar on the river and listened to some good live music and had a margarita.

Yesterday I went to a couple of thrift shops looking for a few pots and pans for the boat but didn’t have any luck.  Went to Walmart to get a mask, fins, and snorkel for Ken in case he needs to get in the water for anything during the boat trip (hope not).  And then I came home and took a nap!  Geez!  I go to 3 stores and it wears me out!  Today was much better, though.  I felt a lot less tired today.  Of course, I didn’t do much, although we got the laundry done and I worked until 1815. 

The big boat trip will commence this weekend.  Ken’s brother, Fred, has kindly volunteered to fly down from Rhode Island and make the trip with Ken.  Thank you, Fred!  Fred arrives on Thursday, they’ll go up to Jacksonville on Friday, and hopefully they’ll leave the dock on Saturday morning.  Hopefully it will be an uneventful – and maybe even fun? – trip.  Smooth sailing, guys.  Hope everything goes well.

Here it is almost 2000, so it’s time for me to call it a day.  Work tomorrow morning, chemo tomorrow afternoon (1400).  Here’s hoping for another week of no major SEs! 

Thursday, August 11, 2011

5 down.....7 to go......almost half way through Taxotere.......

You know you’re a cancer patient when…… you no longer have to budget in haircuts..colors..eyebrow waxing…

My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style."   Maya Angelou

I’m happy to report that I’m feeling good today – just a little tired – but that’s it.  And that’s partially from steroid-deprived sleep, I’m sure, and getting up at 0500 to work.  I can handle ‘tired,’ though.  It’s the other SEs (side effects) that are tough to handle sometimes.

I had a good appointment with Dr. Sprawls yesterday.  He was running an hour behind, but it didn’t even bother me.  I had a few questions for him, all of which he answered.  The first thing I asked him was if the dexamethasone (steroid) could be causing the severe abdominal pain instead of the Taxotere (chemo).  He said it was possible and asked what the dexa dosage was.  I couldn’t remember, so I called Ken who looked at the bottle – 4 mg.  Dr. Sprawls said I could try cutting them in half – incredibly small pills (hard to cut) – or he could give me an Rx for 2 mg, which is what he did.  So today I have been taking 2 mg instead of 4 mg.  Tomorrow I will start the Bentyl (antispasmodic) and hope for the best.  Turning into quite the “junkie” lately.  For someone who NEVER took prescription meds, I’ve got pill bottles all over the place now.  Can’t say as I like the looks of it, but “ya gotta do what ya gotta do.”  I’m still taking the “healthier drugs,” too – vitamins and supplements, which I feel much better about taking. 

My next question for Dr. Sprawls was what to do about the burning, watery eyes I’ve been experiencing lately.  They’ve been watering so much, especially in the morning, that it has really been driving me crazy.  It’s hard to do serious transcription when everything is so blurry or when I’m constantly having to wipe my eyes so I can see straight.  He asked me if I had ever seen the movie “Flubber.”  I don’t really remember it, but he said my eyeballs have been flubberized and boinged all over the place because of the chemo.  So he suggested I get some eye drops called “Refresh” for DRY eyes!  I said, “Dry eyes??  That’s not my problem.  It’s watery eyes!”  So then he explained in great detail – very little of which I remember – something about it being very dry behind the eyes, which is causing the tears to flow.  Okay, it actually made sense when he was telling me.  I just wish I could remember the explanation.  At any rate, I obediently bought some Refresh and after ONE treatment my eyes were feeling so much better and were hardly watering at all!  With drops for dry eyes!  Go figure.  I’ve been using them today, and they’re really helping.

And the BEST part of yesterday’s appointment was that Dr. Sprawls said to me, “You are really an inspiration…..handling all the ups and downs with such dignity.”  That really made my day – such a kind, genuine thing to say.  Maybe he says that to everybody, but I kind of doubt it…..at least I’m going to let myself believe that he doesn’t.

We forgot to discuss my “numbers” during the visit, but I knew the nurses upstairs in the chemo suite would be on top of that.  Sure enough, Ashley told me the numbers looked good.  I asked her what the white count was, and she said 9.23!  Holy cow!!  I thought she must have been looking at somebody else’s results!  But she gave me a copy of it, and that’s exactly what it said!  Woo hoo!  Of course, I didn’t have chemo last week, so I’m sure that helped with the boost.

The chemo drip went smoothly yesterday, and I was feeling good afterwards and have continued to feel good all day today.  Finished my work around 1400 and then went “shopping” at omahasteaks.com!  Thank you so much, Mom and Free, for the wonderful gift certificate!  That was so thoughtful of you, and we are making room in the freezer right now for the delicious goodies that will soon arrive on our doorstep.  They have such a nice variety of things – not just steaks.  Can’t wait! 

Please keep your fingers crossed and all those positive thoughts flowing that I glide through the weekend with NO side effects.  Maybe we’ll even make it to the beach!  Still not sure what’s happening with the boat, but I’ll keep you posted on that when I know more.  LOVE YOU ALL!

Tuesday, August 9, 2011

One the eve of #5.......


You know you’re a cancer patient when…….you can rattle off your WBC and platelet counts and actually know what good and bad are....


Nobody trips over mountains.  It is the small pebble that causes you to stumble.  Pass all the pebbles in your path and you will find you have crossed the mountain.  ~Author Unknown

I have to admit I’m feeling a bit apprehensive and nervous about Taxotere #5.  I’m terrified of the severe abdominal pain because I don’t know when/if it’s going to hit.  Of course, I hope it doesn’t hit at all.  That’s the ideal scenario.  I know Kenny wants to go back up to the boat and get things squared away (we still don’t know if it’s coming down the intracoastal or I-95 – having communication difficulties with the guy who said he could trailer it), but he’s afraid to leave for very long because of the “abdominal pain mystery.”  So, I guess I’ll just go for tomorrow’s drip (1100 appointment) and see what happens – hopefully it will be smooth sailing and nothing will happen.

I wish I could report that things have been wonderful since my last post, but I just haven’t been feeling all that great.  Yesterday, I got wiped out by a wave of depression.  I spent most of the morning at the laundromat doing 8 loads of laundry (for 2 people!! – but that included the dog bed, all the blankets, the comforter, sheets, towels, clothes, etc.).  We had hoped to go to the beach after that for some R&R.  However, by the time I got back to the RV, the thunderstorms had started rolling in.  SOOOO, I ended up taking a nap instead – slept all afternoon.  Felt a little better when I woke up. 

Today I was still feeling a bit “down in the dumps,” but I had to work ALL day (started at 0600 and quit at 1710), so that kind of occupied my mind and kept my mind off “my troubles.” 

And now here it is 2000, and it’s time to climb into bed and read for a bit.  I’m trying not to think about tomorrow and the days ahead.  It is what it is, and I will deal with it!  I’ll keep you posted.  Hopefully they will be happy posts.  Hugs to everybody!

Thursday, August 4, 2011

Congratulations to Becky and George!


You know you’re a cancer patient when…….you wish you still had bad hair days...... 

When life gives you a 100 reasons to cry, show life you have 1000 reasons to smile.  – Unknown

Today was the day of the “big event.”  My sweet stepsister, Becky, married her “beau,” George.  We are all so excited for them and so happy to have George (a fabulous dude) an “official” member of the family!  Wishing you guys many, many years of happiness together!  Kenny and I were very sad that we couldn’t be at the wedding/family reunion of sorts, but we just couldn’t make it happen with my current circumstances.  SOOOO, we did what we could – we went to Paul’s Smokehouse, a restaurant/bar on the Indian River in Titusville, at 1700 (the time of the wedding), and had a margarita in their honor!  It was NOT the same as being there, but we did the best we could.  And we were thinking of them and toasting to them at their very special time.  As I write this, I hope they all are having a wonderful evening celebrating together. 

I had my appointment with Dr. Sprawls yesterday.  Had to have blood work and a urinalysis done beforehand.  When I came out of the restroom and handed the girl “the cup,” she said, “You can go right into room 5, and Dr. Sprawls is in there waiting for you!”  OMG!  I was shocked.  I kept Dr. Always Late waiting!  And I actually felt terrible about it…..seriously.  (I was way early for my appointment, so I don’t know how that happened).  I walked in the room and apologized profusely for keeping him waiting.  He about laughed his head off.  Anyway, it was a jovial way to start the appointment.  As for the abdominal pain, he’s pretty baffled about it.  He thinks I might be in a rare category of people who have rare side effects to Taxotere.  Not unheard of, just not common.  He still wanted to skip the chemo yesterday since I still wasn’t feeling all that great.  We’ll do another Taxotere next week and see what happens.  If no side effects, we’ll forge on.  If severe abdominal pain, we’ll consider switching to Taxol.  I did tell him that if he thinks Taxotere is what I need and is the most effective protocol for my diagnosis, etc., then I could tolerate the side effects.  It’s only brutal/unbearable for about 48 hours.  Then there’s an additional 2-3 days where the discomfort is there, but it’s tolerable.  Anyway, we’ll just take it one step at a time and go from there.  I’m a third of the way through this protocol…..only 2/3 left to go.  That’s no so bad, is it?!  Of course, it’s easy for me to say that now because I’m not in pain at the moment.  I don’t think I could have said that on Sunday night or Monday.  My white count was low again at 3.62, but Dr. Sprawls wasn’t worried about it.  He said, “That’s not low.  We know what low is around here, don’t we?!”  I said, “Yup, been there, done that.”  However, I’m not happy being below the low end of normal.  Just have to take extra precautions.

I’m getting a little frustrated by my lack of stamina/energy/motivation.  Today I was feeling pretty lethargic and just couldn’t get motivated to do anything.  I know part of the problem was feeling sad about not being at Becky and George’s wedding and being with all the family, etc.  Another part of the problem is that I’m just so intolerant of the heat now – never used to be that way.  Anyway, I tried to go for a walk this afternoon and only made it about 15 minutes.  Then I had the brilliant idea to take a lounge chair down by the river and read for awhile.  Now THAT was wonderful!  There was a beautiful breeze, no mosquitos (don’t know where they were hiding, but it was most enjoyable), and I watched a pod of about 10 dolphins playing in the water.  It was lovely.  Couldn’t get a good photo of the dolphins, but I got a picture of my lounge chair, so you can get an idea of the beautiful setting.  That’s right here in the campground – just a short walk from our campsite. 

I guess I don’t really have too much other news.  I already have my PJs on, and I think it’s time to climb into bed and read for a short while.  For the most part, I’m feeling pretty good…..just not my usual self.  Really looking forward to feeling great again……I know it’s just around the corner……..


My chair down by the river

View from my chair (including my feet) and VAB on other side of river -- nice place to read a book, eh?

A margarita for Becky and George at Paul's Smokehouse


Monday, August 1, 2011

More best laid plans go awry........

You know you’re a cancer patient when…..you have more doctors than friends!

Kind words can be short and easy to speak, but their echoes are truly endless.  – Mother Teresa

Well, I had hoped to be writing my next blog entry as we were cruising down the Intracoastal Waterway.  But that’s not going to happen.  Kenny and I went up to the boat (in Jacksonville) early Saturday morning with the plan to finish getting it ready for the trip south.  Our good friends, Debbie and Bill, offered to keep the dogs while we made the trip.  It was so nice of them because we knew the dogs were in good hands, we didn’t have to worry about them, and they like playing with Maisey (the St. Bernard) and Chloe and Danielle, the adorable granddaughters.

I had also gotten permission from Dr. Sprawls to skip chemo this week so I could make the boat trip.  He said it would be fine; we would just tack it onto the end so I would still get my 12 Taxotere drips.  And I have a light work load this week because the doctor I transcribe for is out of town, so I would just have Jill’s dictation.  Everything was lining up perfectly for the trip.

Anyway, we arrived at the boat around noon on Saturday.  Kenny got right to work fixing things, cleaning things, etc.  Unfortunately, I just don’t have the stamina I used to have (thank you, chemo!), and I can’t tolerate the heat like I used to.  The boat is in a covered slip (roof overhead), which provides shade, but there was absolutely no breeze at all, so it was unbearably hot.  I ended up being the “errand girl” – going to Walmart, Publix, Ace Hardware, etc.  I didn’t feel very useful, but Kenny would have had to waste time doing those things if I didn’t do them.  I also found it very difficult to hang out on the boat for prolonged periods of time because of all the wakes and rocking and rolling.  Another thing that never used to bother me – rocking and rolling has never been a problem for me, but it sure was this weekend.

The bed in the boat is extremely comfortable – the previous owner put a piece of really good memory foam (about 6” thick) in there, so we slept great on Saturday night.  We continued with the projects on Sunday and got quite a bit accomplished.  I had to return the rental car to the airport Sunday afternoon, and the previous owner gave me a ride back to the boat.  He just bought a super jazzy Porsche Boxster convertible (used), so it was quite fun getting a ride in that. 

We took showers at the marina, and I had bought some things at Publix to have for dinner.  Shortly after dinner, I was ready to climb into that comfy bed and read for a little while (I’m reading “Unbroken” on my Kindle – quite a book). 

After getting an hour or so of sleep, I woke up at 2230 with severe abdominal pain.  It was quite unbearable and kept me awake for most of the night – tossing and turning and trying to find a comfortable position – it was a very long night.  By morning, I wasn’t feeling any better – the abdominal pain continued, I couldn’t stand up straight because of the pain, and I was feeling dizzy and nauseous.  So we came to the conclusion that we should probably rent another car, Kenny would drive me back to the RV, and the boat trip would have to be delayed.  We’ve also come to the conclusion that I probably won’t be able to make the trip – I just don’t have the stamina right now.  Kenny said he can make the trip by himself, and maybe I could meet him when he gets a little closer to home and make the end of the trip.  I’m so disappointed, though, because I really wanted to make the whole trip.

I’m slowly starting to feel a little better.  I’ve been in bed since we got back to the RV around 1600 this afternoon.  I called Dr. Sprawls’ office this morning and let them know what was going on.  He wants to see me on Wednesday – he said we’ll still skip the chemo this week due to the problems I’m having.

I guess that pretty much brings you up to date on things.  Time to read for a little while and then get a good night’s sleep……hopefully.