St. Augustine -- our last stop of the RV road trip before heading "home"

Faith is taking the first step even when you don’t see the whole staircase.  – Martin Luther King, Jr

Yesterday we arrived in St. Augustine (FL).  We lucked out and were able to get a walkup site for the whole week.  We actually had 2 different reservations – one for 2 nights and one for 3 nights (it’s VERY hard to get reservations here at Anastasia State Park, especially for big rigs; we’ve been trying for months).  Anyway, our good friends, Debbie and Bill, are coming up in their camper on Wednesday night, but we were going to have to leave and go to a different campground on Friday morning because we couldn’t get a reservation for the weekend.  So we were ecstatic when they had a walkup site yesterday.  Now we can stay until 10/31, which is when I have to be back in Titusville to be “tattooed and molded” before the start of radiation.  I’m not looking forward to the radiation at all, but I’m VERY much looking forward to being done with all the treatment. 

We had a nice stay in Appling, Georgia at a Corps of Engineers park on J. Strom Thurmond Lake.  Our site was overlooking the lake, which was really nice.  We weren’t able to spend too much time sitting outside at our site because the weather was quite windy and cold.  The lake is huge and beautiful – totally undeveloped.  We took a drive around the lower half of the lake – quite remote but very pretty countryside. 

I’ve been feeling pretty good this past week.  My current “annoyances” are my really ugly and totally black and blue fingernails.  They’re quite gross really – they look like part of a Halloween costume!  Kenny thinks I’ll be losing them; I hope he’s wrong.  My eyes are still constantly watering, and my nose is constantly running – 2 huge annoyances that I hope will dissipate SOON.  At least I’m feeling better, and my taste buds are starting to return to normal – not sure if that’s a good thing or not….LOL….I hope I don’t gain weight.  Now that I’m feeling better, I hope to get back into exercising again – at least some good walking and bike riding – as much as my leg can handle anyway.

It’s time to get the day started.  Not sure what we’ll do today – maybe start with a walk on the beach (the beach here is absolutely gorgeous!).  My work will start coming in/piling up later this afternoon, so I need to take advantage of a little bit of free time this morning.

I’m posting a few pictures of various parts of our trip (and one photo of my very ugly fingernails).  HUGS TO EVERYBODY! 

You know you're a cancer patient.....when you think a half inch of hair on your head is a fantastic thing. Before breast cancer, if your hairdresser had accidentally cut you that short, you'd be ready to sue.

Grand Ole Opry House

North Carolina Mountains

Lakes End Diner (in the mountains, on a lake) -- we stopped for lunch, and they had the Grand Ole Opry station on the TV and were playing the show we had missed!! (when I was in the ER) -- very cool!

In the beautiful North Carolina Mountains -- on the Cherohala Skyway Drive

Waterfalls on one of our scenic drives (if you look closely, you can see people behind the falls)

Our campsite at Cardinal Ridge RV&B -- wonderful place!

At Cardinal Ridge RV&B

At Cardinal Ridge, the entrance gate says "Welcome Home" -- they want you to feel like you've just arrived home, and they make you feel that way.

Our campsite at J. Strom Thurmond Lake (Petersburg Campground).  The lake is behind me, but you can't see it in the photo.

The beautiful fingernails!  Aren't they lovely??!!

Enjoying ourselves in Franklin, NC

Boy, I've been terrible about keeping up my blog, haven't I??!  So sorry.  Been too busy having fun!  We're at a wonderful little "campground" in Franklin, NC called Cardinal Ridge Farm RV and B -- a very unique and wonderful concept.  The owners, Kathy and Kenny, are absolutely fabulous people and have bent over backwards to make our stay SOOOO enjoyable.  They've mapped out scenic drives for us to take, stops to make along the way, places for lunch, places for the best ice cream (I know, I'm not supposed to have ice cream, but it sure was delicious!  It was a local creamery where they raise their own cows, make their own milk, cheese, ice cream, etc.).  And Kathy has made 4 or 5 calls to the local hospital about me getting my blood work done there -- will they accept my insurance, will they accept out-of-state doctor's orders, what time does the lab open.  I just can't say enough about this place and about Kathy and Kenny -- we feel like we've known them for years.  They're really laid back, easy-going people.  Oh, I forgot to mention that they have chickens and geese and bees, too.  And they put together an unbelievable breakfast (which is the "B" of RV and B) -- very delicious and a nice variety.  Kathy also feeds the wild deer every night -- she spreads corn beside the driveway, and all the deer come out of the woods to eat, along with some wild turkeys.  Quite a sight.  The views are spectacular, and there are lots of trails for walking.  There's also a gazebo up on a "ledge," which is a wonderful place to watch the sunset over the mountains while having a glass of wine.  I wish we lived closer -- we would visit often!  We're going to be very sad to leave tomorrow.  But it's time to start our trek south.  We'll be heading to a Corps of Engineers park on J. Strom Thurmond lake in Appling, GA for a few days and then on to St. Augustine before heading home. 

I've been feeling pretty good for the last few days.  I think a lot of it has to do with this great place we're staying, with the wonderful hospitality, and the cool clear mountain air.  We've taken some beautiful scenic drives through the mountains -- narrow, winding, mountainous roads with spectacular views and awesome fall colors.  We don't have ANY fall in Florida, so we're REALLY enjoying the cool weather and the fall foliage. 

I had my blood work done this morning at the local hospital.  Unfortunately, the hospital wasn't in my network, so I had to pay for it, but there's a lot to be said for convenience and "getting it done."  I needed to have my INR checked in case the Coumadin had to be adjusted again.  Lo and behold, my INR was perfect -- 2.5!  The goal is to have it between 2 and 3.  So I'll continue on with my current dose, and I don't have to have blood work done for at least 2 weeks, maybe longer. 

My leg is slowly (very slowly) getting less swollen and less painful.  I'm SOOO glad the Lovenox injections are finished -- they were awful.  I hate taking warfarin (Coumadin), which somebody pointed out to me is actually rat poison(!) -- what's a little more poison in my body after 6 months of chemotherapy??!!  UGH!  And I absolutely hate wearing the compression stockings!  Have I said these things before?  I guess I'm sounding like a broken record.  I'll try not to harp on that anymore.

Okay, I'm headed to bed.  Been up since 0430 because I had a bunch of transcription to do, which I didn't finish, so I guess I'll be up at that hour again tomorrow.  Nighty nite.......

Grand Ole Opry was really cool!

I know I need to post something on my blog, but I'm so tired right now.  I just wanted to let you know that I'm okay.  Went to the Grand Ole Opry last night, and it was awesome.  The lineup was LeAnn Rimes, Trace Adkins, Sara Evans, Scotty McCreery, Dierks Bentley, Eric Church, and Chris Young.  We got tickets in the handicapped section, so I was able to get up and move my blood-clotted leg whenever I wanted (per doctor's orders) without disturbing anyone. 

We left the Nashville area this morning and headed towards the Smoky Mountains, taking a scenic (and very beautiful) route instead of the interstate.  The only problem was that the campground I had picked out for the evening was a little remote, and I totally forgot (due to chemo brain, I guess) to check for AT&T coverage to make sure I would be able to do my work -- there was no coverage.  So we had to change our plans midstream.  Ended up at a pretty nice campground in Crossville, TN -- got a site on the pond.  We'll stay here tomorrow, too, so I can finish up the work I didn't get done today, do laundry, and figure out where we're going next.

I'll write more later -- in a day or 2 -- but I need to get some sleep. 

Just feeling discouraged

The only disability in life is a bad attitude.  ~Scott Hamilton

We went and saw the vascular specialist on Thursday, and he was a really nice, cool, young dude.  We told him we missed the Grand Ole Opry cuz we were stuck in the ER all afternoon on Tuesday.  He said, “Well, what else do you want to do while you’re here?  Want to go to a hockey game?”  We said that would be fun.  So he gets out his iPhone (R.I.P. Steve Jobs), and checks to see if there’s a home hockey game this weekend!  Nope.  He said it’s Disney on Ice this weekend.  We said forget that.  He started looking up other stuff and then told us about a cool bar with good live music where the locals hang out and the celebrities pop in occasionally.  That sounds like fun except we’re definitely not night people.  In fact, I’m usually in bed by 8:00!  Things usually don’t get going on the nightlife scene until 9:00 or so.  Now we’re trying to find a place that might have live music on Sunday afternoon – preferably outside.   That would be more our style.

Back to Dr. Siragusa (vascular guy) – we did get around to talking about the problem at hand.  First we saw the nurse, who was also very nice.  She explained a surgical procedure where they go in and clean out the vein, removing as much of the blood clot as possible.  They only do it if the blood clot is above the knee, however.  It’s also not an outpatient procedure.  You have to be admitted, and it has to be done within 3 weeks.  Needless to say, I wasn’t too excited about any of that.  They wanted to do another ultrasound to see exactly where the clot was before deciding if I was a candidate for that.  The ultrasound showed that the clot started about 4 inches above the knee and extended down below the knee.  Geez!  I’m thinking the blood clot is about the size of my little finger nail, not a foot long!!  The good news was that it was nonocclusive, so the entire vein wasn’t blocked, meaning blood could still flow around it.  Anyway, the bottom line was that I wasn’t a candidate for the surgery (YAY!) because the clot wasn’t far enough above my knee and because the risks outweighed the benefits. 

It turns out that my biggest risk factor was cancer – cancer patients are more susceptible to developing blood clots.  Also, prolonged sitting doesn’t help, which is what I do for my job all day long.  Anyway, Dr. Siragusa said that I should continue the Lovenox injections (which I absolutely HATE; 8 shots down, 12 to go), continue the Coumadin, and wear compression stockings on BOTH legs.  Mind you, I feel like I’m 90 years old wearing compression stockings and taking Coumadin!  The stockings are a real nuisance.  I have a really hard time getting them on and off because of my extremely sore fingernails.  Over time the stockings want to slide down, so I have to go in the bathroom (wherever I am) and pull them up every few hours.  And did I mention that they are THIGH-high stockings??  Oh yes, they are a lot of fun.  I have to wear them all day long, but fortunately I can take them off at night.  And they will REALLY be a lot of fun in the Florida heat and humidity.  Can hardly wait. 

Yesterday we spent the whole day at the campground.  We were so tired from all the running around on Thursday (and the “events” of the week) that we decided to just stay put and relax for the day.  We had to change campsites, which took a little time but wasn’t too bad.  I actually was feeling really depressed all morning Friday – just sick of everything.  I was in full-fledged, “pity party” mode.  So I took an anti-anxiety pill, climbed into my outdoor reclining lounge chair with a pillow and a blanket, and fell asleep for most of the afternoon.  Felt a little better when I woke up.  Felt even better when UPS came and delivered my new Kindle!

Oh yeah!  We were able to get tickets to next Tuesday’s Grand Ole Opry!  Not the same lineup, and the seats aren’t very good, but we’ll see LeAnn Rimes, Trace Adkins, Sara Evans, and some others.  At least we’ll get to see a show!  Our seats are in the last row of the handicapped section, so I can get up and walk around periodically without disturbing too many people…..I think……

Today we went out on a riverboat/showboat cruise on the Cumberland River.  It was a beautiful day and the show was really good.  Unfortunately, we had terrible seats.  When you buy the tickets, you’re assigned a table but not seats (each table has 10 seats).  When we arrived (early) today, they asked if anybody wanted to pay $5 and take a VIP tour of the boat and see the wheelhouse, etc.  They also said we would board 15-20 minutes before everybody else.  We decided it sounded interesting and decided to do it.  The problem was that while we were doing the tour, they let everybody else board.  Although the tour was interesting and worth $5, we ended up with the last 2 seats at the table – with our backs facing the stage!  Yes, we turned our chairs around, but there was a huge lady sitting right in front of us at the next table, and we had very limited views of the stage.  Oh well, it was still a good show. 

Tomorrow we will probably just hang out at the campground unless we can find some live music somewhere in the afternoon.  Monday might be another R&R day, as well as planning the rest of our trip.  I do have to go for blood work on Monday morning, and Dr. Siragusa’s office will call me Monday afternoon with the results to let me know if I have to adjust my Coumadin.  Then I will probably have to get my blood drawn weekly again until they get the dosage right.  Let the fun begin!  AND, I have to watch what I eat with Coumadin – can’t have too much vitamin K – so gotta limit a lot of my favorites – broccoli, spinach, kale, cabbage, most green leafy things, and cranberries.  I can’t remember what else, but it’s not going to be fun.  From what I gather, you’re not supposed to eliminate these things, but you’re not supposed to have too much of them.  I’m still a little confused on that whole issue. 

I wish I could tell you that this is just another little bump in the road on this whole crazy journey, and that it’s no big deal.  I know I will get to that point – where I feel that way – but right now I’m just not dealing with everything so well.  I just really wanted to “get away from it all” on this trip and forget about the medical world and all the crap I’ve been dealing with.  And now this somewhat major obstacle has been tossed in my path, and it just really sucks, to put it mildly.  I keep reminding myself that there are a lot of people a lot worse off than me, so get over it already.  Well, it’s just easier said than done at the moment.  But, like I said, I know I’ll get there; I just need a little attitude adjustment.  I need to quit whining and complaining and just deal with it and move on….. 

You know you’re a cancer patient when….. you see the first pink groceries on the shelf and groan

Before the riverboat cruise in Nashville

The Grand Ole Opry......

There are two ways of meeting difficulties: you alter the difficulties, or you alter yourself to meet them.  - Phyllis Battome

Well, today’s blog was supposed to be about how fabulous the Grand Ole Opry was last night.  I couldn’t wait to tell you how awesome it was to see and hear Carrie Underwood, Randy Travis, and Josh Turner (and the other stars, too).  HOWEVER, we never made it to the Grand Ole Opry. You know the leg pain I was telling you about in my last post?  Well, it wasn’t going away, so I figured I’d better call my onco’s office and the lymphedema therapist that I went to back in March to see what they suggested.  Dr. Sprawls was on vacation, but the oncology nurse got in touch with the nurse practitioner and then called me back.  She said it would be highly unusual to have lymphedema in my leg unless I had lymph nodes removed from my groin.  She said it sounded like I could have a blood clot and I needed to get to an ER ASAP.  Oh man!  When it rains, it pours!  We noticed there was a hospital about 10 minutes from the campground, but I had to call my insurance company first and make sure they were in my network.  They were!  So off we went to the ER.  As soon as I mentioned possible blood clot, they had me back in a room in about 3 minutes.  They were so efficient, and everyone was SOOO nice.  And I was sure to tell everyone that “ this CAN’T be serious because we have tickets to the Grand Ole Opry tonight,” and I told them who the lineup was.  They all said they’d do their best to get us there……and they were all joking around that they would take our tickets if we couldn’t make it.  Long story short – I had an ultrasound, and sure enough, I have a DVT (deep vein thrombosis)/blood clot in my right leg.  Wonderful news, eh?  Well, by the time radiology read the ultrasound, the ER doctor came and told us the news, the various nurses gave us all the instructions, they called various pharmacies to see where we could get the drugs, etc. etc., it was just too late to rush home, change our clothes, let the dogs out, and make it to the show.  Not to mention, we were pretty exhausted from the 5 hours spent in the ER.  So I simply sat in the ER and cried…..for a few minutes.  We had been looking forward to that show for SOOOO long, and it was such a huge disappointment to not be able to go.  We did call the Opry, and they did say they would refund our money under the circumstances.  Oh, I forgot to mention that the ER doctor said we could go to the show if I promised to get up every 15 minutes and walk around.  Now how do you think the people around us would like that??!!  Anyway, we’re still hoping we might be able to catch anotherwhile we’re here.  But I have to see a vascular surgeon tomorrow, so I’ll see what he says.  If I still have to get up every 15 minutes, I doubt we’ll do it.  We’ll see. 

To continue with this wonderful medical saga, I now have to give myself an injection (into the belly) of Lovenox every 12 hours (I’m letting Kenny do the honors – he did a good job at 0500 this morning – and what a trooper to get up at that hour to stick a needle in his wife’s belly), take Coumadin once a day, wear a compression stocking 24/7, and who knows what else I’ll find out tomorrow?!  The injections BURN LIKE HELL for about 5 minutes.  AND they almost cost me $375 for a 3-day supply!  (I have to do it for 10 days).  And don’t get me started on Big Pharma.  I can really get on a soap box with that!  Somehow the nurse got me on an assistance program, and it didn’t cost me anything.  Thank God! 

So much for getting away from doctors and “all that crap” for a little R&R!  We’re keeping our fingers crossed that the vascular guy doesn’t tell us tomorrow that we have to cut our trip short and head home and establish with a vascular guy there.  Now THAT would be a huge bummer!  But the ER doctor mentioned it as a possibility.  And I’m sure I’m going to have to have blood work at least weekly again and have the Coumadin adjusted accordingly, etc. etc.  Blah, blah, blah…..  In all honesty, I’m just really sick and tired of all this and just want to have some fun.  I’m hoping that’s imminent. 

Oh yeah, I forgot to mention the “icing on the cake” yesterday.  When I finally climbed into bed at 1930 to read my Kindle (a great book called “Thunder Dog”), I discovered my Kindle was BROKEN!  The screen was all messed up and just full of lines and weird characters.  I was absolultely beside myself.  Just couldn’t take any more.  I really just wanted to relax with a good book.  I said “screw it” and took a sleeping pill and went to sleep instead.  I called Amazon today, and my Kindle is still under warranty and they will ship me a new one right away – I’ll have it Friday.  Yay!  Some good news! 

I AM sitting outside by the lake right now, enjoying a beautiful day, so it’s not ALL bad.

The picture below was taken the day we did the backstage tour of the Grand Ole Opry.  Forgot to put it in with the other pictures the other day.  (Kenny is pretending to sing – not yawning…..)

You know you’re a cancer patient…….when your life is unpredictable (and you used to love being spontaneous)! 

On the backstage tour of the Grand Ole Opry

Made it to Nashville!

When you come to the end of your rope, tie a knot and hang on.  ~Franklin D. Roosevelt

This will be (relatively) short because I’m already in bed(!) and am really tired.  But I wanted to let you all know that we made it to Nashville!  Got here a daily earlier than planned after a relatively uneventful trip.  We had reservations at Seven Points Campground (a Corps of Engineers park) on J. Percy Priest Lake in Hermitage, TN (just outside of Nashville).  What a beautiful park!!  I had reserved a site across the road from the lake because they didn’t have any sites available right on the lake.  When we arrived, I asked if they had any on the lake by chance.  Lo and behold, they had one available for 5 nights and then we would have to move for the last 3 nights.  We jumped on it!  It’s a really beautiful site right on the lake.  Last night we sat outside and had a campfire (with our “Lil Red Campfire – gas – perhaps a little less toxic than a wood fire?) and watched the sun set over the lake.  It was SOOOO nice. 

It feels really good to be here, but I wish I could report that things are great and everything I had dreamed of and hoped for.  Unfortunately, I’ve been feeling pretty lousy since we left Titusville – not really terrible, just far from great.  I just have that underlying “yucky” feeling all the time, along with the terrible taste in my mouth, the watery eyes, and the sore and ugly fingernails.  Now, to make matters worse, I think I might have lymphedema in my right leg.  It has been very painful to walk on it for a couple of days.  I figured it would just “go away,” but it hasn’t, and the right leg is quite swollen and significantly larger than the left.  Why did this have to happen now for crying out loud??!!  I’m not in a very cheery mood, and right now all I can say is “Cancer Sucks!”  Sorry to be so blunt, but that’s how I feel at the moment.  We’ve been looking forward to this trip for so long, and I really wanted us to have a nice, relaxing, fun time.  Now here we are at a beautiful campsite on a beautiful lake, half an hour from downtown Nashville, and I’ve been in bed since 1830 – with my leg wrapped in an ace bandage and applying hot packs and cold packs.  Man, oh man, sometimes it just never ends.   

So I don’t sound like a total whiner/complainer, I have to say that we did manage to have a little bit of fun today.  We drove to the Grand Ole Opry because we wanted to make sure we knew where it was for tomorrow night’s show.  We found it no problem, and they were just about to start one of the backstage tours, so we decided to take it.  It was pretty neat, and we even got to meet Vince Gill as he was coming out of his dressing room for an interview he was about to do.  Of course, I wouldn’t have had any idea who he was if our tour guide didn’t tell us…..LOL…..that’s how “up” on country I am! 

After the tour, we went downtown and had a late lunch/early dinner at Jimmy Buffett’s Margaritaville.  And the highlight of the whole day was this guy who rode his motorcycle to Margaritaville, also to have lunch, and he had his 2 motorcycle-riding dogs on the bike with him.  They were the cutest things – complete with dreadlocks and goggles – and they just sat on the bike the whole time the guy was in the restaurant.  Kenny went and talked to the guy afterwards.  The little white dog is 18 years old(!) and the black one is 3.  They’ve both been riding since they were puppies.  I would say at least 100 people stopped and took pictures of them (including me) while we were eating – we had a great table at the window.

I guess that’s enough rambling for today.  I’m going to try to post some photos – of our campsite and of the adorable dogs.  Hopefully my next post will be a little cheerier.  I really want to tell you that I’m feeling great and life is good.  HUGS to everybody.  Time for me to go to bed.  (I’m not sure what time will show up on my post, but we’re on central time now; it’s 2000 as I’m finishing this).  G’night all! 

You know you’re a cancer patient when…..a trip to the grocery store calls for a nap when you get home!

Our campsite at Seven Points Campground

Campsite at Seven Points

Sunset over the lake from our site

The cutest motorcycle-riding dogs! Can you find the white one? (He's sleeping up by the windshield) 

Isn't he adorable??