Happy (belated) Thanksgiving!

Family isn’t always blood.  It’s the people in your life who want you in theirs; the ones who accept you for who you are.  The ones who would do anything to see you smile and who love you no matter what. – Unknown

I hope you all had a wonderful Thanksgiving and are still enjoying what’s left of the weekend.  We had a great Thanksgiving here in Florida.  Our good friends, Debbie and Bill, invited us over for a Thanksgiving feast on Wednesday.  Debbie is a fabulous cook and went all out – a beautiful turkey “steamed in bourbon,” homemade stuffing made from toasted cranberry walnut bread with all kinds of great things added to it, garlic mashed potatoes, mashed sweet potatoes, steamed veggies, homemade pumpkin cheese bread, homemade cranberry and orange relish, homemade pumpkin pie (I’m not a pumpkin pie fan, but it was the best pumpkin pie I’ve ever had – so delicious), and a homemade apple chutney dish.  Oh my!  It was all SOOOO delicious.  On Thursday (Thanksgiving Day), Debbie, Bill, and I went to Animal Kingdom (a Disney theme park in Orlando) and had a wonderful day.  Kenny opted not to go because his foot was really bothering him, and he was afraid of all the walking – and we did a LOT of walking.  We offered to push him around in a wheelchair, but he decided he’d rather stay home and work on the boat.  I had never been to Animal Kingdom before, and it’s a beautiful park.  We really enjoyed the safari – made me feel like I was back in Africa where we went on a couple of different safaris many years ago.  There were lots of other great rides and exhibitions, too – thoroughly enjoyed the day.  We left the park around 1500 (we had gotten there at 0800 when they opened) and went back to Debbie and Bill’s for delicious leftovers.  Kenny and the doggies joined us for that.  All in all, it was a wonderful Thanksgiving. 

On Friday I did about an hour of Black Friday shopping.  That’s about all I could handle of the crowds. 

Yesterday we went up to Kars Park on Merritt Island and watched the NASA rocket launch of the Mars Science Lab and Curiosity rover.  It was a beautiful day and a beautiful launch.  I think the rover is supposed to reach Mars next August (it has to travel something like 350 million miles to get there)!  After the launch we went to the boat.  Ken worked on the boat for a few hours.  I got my Christmas decorations out of storage and organized the storage unit a little bit.  Ooooooeeeee!  It was a mess in there.  The inversion table is now readily accessible – right inside the door – and we will get it out when we move up to Merritt Island next weekend.

Radiation went smoothly again this past week.  13 sessions down and 17 to go.  Almost at the halfway mark!  I guess I don’t really have too much to report on that front.  Just hoping it continues to go smoothly.  No real side effects so far, which is wonderful. 

Oh, I got my port removed on Monday!  Another milestone!  It was a relatively uneventful procedure.  I took a pain pill and an anti-anxiety pill before I went, and then Dr. Imami numbed the area with lidocaine.  So I really didn’t feel too much except some tugging and pulling.  The only real pain I felt was when he had trouble getting one of the internal stitches out.  Apparently the port has 4 holes in it for attaching stitches to keep it in place.  Well, after 8 months, some tissue had grown over one of the holes and buried the stitches, so he had to really work at that one, which nearly sent me through the roof at one point.  But it was short-lived.  And then the port and its 8-inch tube (that went up into the jugular vein) were pulled out.  Piece of cake!  And so happy to have that foreign object out of my body!

The day after the port removal I had to start doing Fragmin injections – once a day for 7 days – along with restarting the Coumadin.  The Fragmin injections are just as dreadful as the Lovenox injections were, but at least it’s only once a day and only for a week.  Six shots down and one to go!  I think I can make it!

I guess that’s about all the news for now.  Kenny just went up to the boat for awhile, and I’m doing laundry, cleaning up the RV, etc.  Might even start my Christmas cards today.  Not too sure on that one, though.

You know you’re a cancer patient when…..you don't even care anymore at daily radiation appointments when yet another male tech is staring at your breast (or lack thereof), lining up the light beams to zap you.

A duck at Wickham Park (where we're camping)

Debbie and Bill -- carving the delicious turkey

Debbie's beautiful Thanksgiving table

Debbie and me in front of the Tree of Life (Animal Kingdom)

A giraffe (just kidding!) at Animal Kingdom

Pluto, Mickey, and Goofy fishing at Animal Kingdom

Debbie and Bill at Animal Kingdom

Launch of the Mars Science Lab and Curiosity rover

Getting my Fragmin injection ready (have to get 12,500 IU from an 18,000 IU syringe into another syringe).  When is my hair ever going to come back?? 

Radiation -- one third done! Woo hoo!

As we grow up, we learn that people who weren’t ever supposed to let us down, probably will.  You’ll have your heart broken, and you will break others’ hearts.  You’ll blame a new love for things an old love did.  You’ll fight with your best friend, you will cry because time is flying by, and eventually you will lose someone you love.  So, take too many pictures, laugh too much, forgive freely, and love like you’ve never been hurt.  Because every second you spend angry or upset is a second of happiness you can never get back! – Unknown.

Yup, I’m a third of the way through radiation!  Sounds so doable now. 

And I’m feeling so good today.  Had my 5^th “no-wait” rads day in a row – made for a very smooth week (rads wise anyway).  Just got back from a 35-minute walk followed by a 25-minute bike ride.  It’s really windy today, which made the walk nice but the bike ride a challenge.  Feels good to have done it, though.  Gotta keep it up now.

As I said, there was no waiting for my appointments this week.  I said to Melissa (one of the techs) yesterday, “Dr. Sprawls must be on vacation this week.  Things are going way too smoothly!”  She laughed and said, “I think so.”  Hence, next week might not be quite as smooth.  But we’re not going to worry about that until the time comes.  Even then, I said I wasn’t going to worry about it, didn’t I??  Don’t sweat the small stuff, etc. etc. 

Tuesday and Wednesday of this week were a bit of challenge work wise – swamped with work both days.  Consequently, I did WAY too much sitting, and my leg got pretty darn swollen.  I KNOW I’m supposed to get up and move around or go for a walk or whatever.  But when there is so much work hanging over my head, it’s hard to force myself to take a break.  I’ll try to do better next week.

I’ve been trying to hang my leg from the ceiling every night before bed.  Kenny rigged up a bungie cord and strap (nothing fancy/very simple) so I can put my foot in the strap and get my leg up pretty high.  Dr. Siragusa (vascular guy in TN) said elevating the leg is good, but you have to elevate it above the heart – not so easy.  But the bungie cord/strap works pretty well.  Kenny asked Dr. Sprawls about using the inversion table, and he said it would be great.  So we’ll have to dig that out of storage – if we can find it!  Just kidding.  It’s in there.  But our storage unit is a disaster area right now – we put so much stuff in there before we took our road trip and also a ton of stuff from the boat.  It’s more or less all just thrown/piled in there.  That’s on the to-do list (cleaning/organizing storage)…..soon…..because I’ll have to get my Christmas decorations out pretty soon, and they’re all in the back…..of course!

Monday afternoon I’ll get my chemo port removed!  That will be a good feeling.  It’s not that it bothers me, really; it’s just that it will signify the end of “an era” so to speak.  I’m DONE with chemo and don’t need that darn thing in my body anymore!  I’m not looking forward to the procedure itself, although I don’t really know what to expect.  It’s just an outpatient procedure done in the surgeon’s office, but I remember when I had my drains removed after the mastectomy.  It, too, was a “simple” outpatient procedure done in the surgeon’s office, but it was no “cup of tea.”  Thankfully I had taken a pain pill before I even went, which I’ll have to remember to do on Monday.  Maybe an anti-anxiety pill, too!  In preparation for the port removal, I had to stop my Coumadin (due to risk of bleeding) for 5 days prior to the procedure.  After the procedure, Dr. Sprawls wants me to do Fragmin injections for 7 days before resuming the Coumadin.  I hope they’re more fun than the Lovenox injections!  Not looking forward to it.  Oh, and do you want me to get on my soap box about Big Pharma??  Probably not.  Suffice it to say that they called the Fragmin prescription into Walmart, I called Walmart to see if the RX was ready, it wasn’t (drug not in stock), I asked how much it would cost -- $650.80 for 7 shots!!!!  How’s that for highway robbery??!!  I told the pharmacy technician that the drug company can jump off a cliff and don’t bother filling the prescription because there’s no way in hell I’m paying that amount of money for 7 shots that I don’t even want!!  SO, then I had to call the cancer center back and tell them I refuse to pay that kind of money.  I asked if I waited a month to get my port out if I could just go back on the Coumadin after the procedure instead of doing the Fragmin.  Meribeth (really nice nurse at the cancer center) said, “Let me see if we have any Indigen, and I’ll call you back.”  After I hung up the phone, I realized she said “indigent!”  LOL!!  That’s okay – call me indigent, poor, destitute, impoverished, needy – call me anything you want; I still won’t pay $650 for 7 shots!  Anyway, Meribeth called me back and said they had some samples they would give me.  What a sweetheart she is!  I was so thankful.  So I picked up the injections today, and she gave me instructions on how to inject myself – once again I will give Kenny the honors.  They only had samples of 18,000 IU, and Dr. Sprawls only wants me to take 12,500 IU.  So Meribeth showed me how to measure out 12,500 into another needle (which is only calibrated in cc).  Thank God this is only for 7 days. 

Well, I guess I don’t have too much other news.  I’m just happy to report that radiation is going smoothly with no side effects so far.  I was extremely tired yesterday, but I think it was more from the heavy work load this week and from juggling work and daily radiation appointments.  My skin is looking good so far – even the radiation oncologist said so.  I’ve been putting aloe on it every day, which is helping quite a bit I think.  I suspect I will get the “sunburn look” and dry skin eventually……but maybe not.

I’ll post a few pictures – two of me hanging my leg, one of Melissa and Robert (radiation technicians/therapists) with “Hal” (the zapper).  (Friday is “jeans optional day,” which is why Melissa has jeans on.), and one a joke that brother, Jeff, sent me from his daily calendar.  I would have loved to pull this joke on Melissa and Robert, but the “vault” is wired with audio and visual equipment so they can see my every move and hear my every word – they’d be onto me. 

Maybe I should explain the zapper a little bit.  Melissa and Robert are actually standing in front of the table that I lie on (or is it lay on??), and the table is perpendicular to the way it normally resides.  Not sure why Robert put it in that position before I took the picture.  It's hard to visualize how it works.  And it looks much spookier in real life!

You know you’re a cancer patient when……the cashier at the grocery store asks "Would you like to donate to breast cancer?"............and you answer......."I already did......2 boobs and 25 lymph nodes.”  (I haven’t actually had the nerve to use that line yet….but it’s not out of the realm of possibilities)

Hanging my leg from the ceiling

Leg hanging (and reading my Kindle)

Melissa and Robert with "Hal"

5 rads down, 25 to go......or 1 week down, 5 to go.......

Life may not be the party we hoped for, but while we're here we should dance.  ~Author Unknown

Happy Veteran’s Day on 11-11-11!  And a huge thank you to all of our veterans and troops past and present who have served and continue to serve our country!  We appreciate the sacrifices you and your families made/make for our freedom.

This past week wasn’t any too smooth, and the “daily thing” is getting old already.  I can’t believe I have 5 more weeks.  Actually, I should clarify this – my sessions with “Hal” were fine, but it’s the traveling and waiting that are getting to me.  I was initially told (many months ago) that the radiation appointments only take about 10 minutes.  I was very happy to hear that; I figured I could work that into my schedule without much problem.  However, that’s the actual “on-the-table” time – which, by the way, is 20 minutes, not 10 minutes.  Now let me tell you about the waiting time!  I put each visit on my stop watch this week – don’t ask me why – and on every day this week, it was an hour and 15 minutes to an hour and 25 minutes from the time I walked in the front door until the time I walked out.  Add another 40 minutes (round trip) in driving time, and we’re talking over 2 hours of time.  Why does it take so long??  My appointments are all at 0900, which is the first appointment of the day.  On Monday, they had to double check all the measurements and setup stuff since it was my first day.  On Tuesday, I finally got on the table at 0950 (my appointment was at 0900 and was the first one of the day).  Well, guess what I found out?!  There has to be a doctor on site before they can administer treatment.  And you’ll never guess who the staff doctor is on Tuesday (and Thursday and Friday)!  Dr. A. L. Sprawls (where A. L. = Always Late)!  Yes, he was 50 minutes late on Tuesday.  Only 40 minutes late on Thursday.  On Friday (today), they asked me to switch my appointment to 1430 instead of 0900 – I wasn’t terribly happy about it, but there wasn’t much I could do about it.  And they were running 35 minutes behind – something to do with an Alzheimer’s patient they had problems with (totally understandable and acceptable).  Before Thursday’s appointment, I decided to take an Ativan (anti-anxiety), which helped tremendously.  I forgot to do that today.  (On Wednesday, I had to wait half an hour after my radiation to see the radiation oncologist; I’ll have to see her every Wednesday to discuss how things are going, etc.  So far, so good)  The technicians were also a little frustrated by having to wait for Dr. Sprawls, and they’ve talked to management about it.  Hopefully something will be done about it.  What, I don’t know.  Don’t get me wrong – he’s a great doctor, and I like him a lot.  In fact, he called me personally last night because I asked one of the nurses to ask him a question about something for me.  I expected the nurse to call me back with the answer, but Dr. Sprawls called me, which is above and beyond. 

Anyway, enough on the aggravating delays and the 2-hour chunk of time out of my day – every day for 6 weeks.  It wouldn’t be so bad if I didn’t have to WORK in addition to doing the rads.  Oh yeah, I said enough on that, didn’t I?! 

I’ve had a long talk with myself and have decided that I’m not going to sweat the small stuff, there are a lot of people with a lot bigger problems than mine, it’s only a little time, and I’M ALIVE!  So that’s the attitude I’m maintaining, and it will help me get through the next 5 weeks....and beyond.  Six weeks of time is really just a small chunk of time in the great big scheme of things.  I CAN DO IT!  IT’S NO BIG DEAL!

While walking around the park on my daily walk yesterday afternoon, I concluded that I really love our lifestyle – you just have to be willing to live in 40 feet of space.  We’ve been living in 40 feet of space for 30+ years now, so it’s not a problem for us.  (Every once in awhile I wish I had a bigger closet!)  It’s really fun to “change scenery” every couple of months and see what the new parks and towns have to offer.  Here at Wickham Park (Melbourne), we have the King Center for Performing Arts right next door to the park.  Last night we went to a great show there – Spencer’s Theater of Illusion.  It was a really good magic/illusions show.  And we’re hoping to catch some more shows while we’re here.  Right here in the park this weekend is the Native Rhythms Festival – with live Native American music all weekend, arts & crafts, food, displays, demonstrations, etc.  We just got back from listening to some great music – sitting outside on lawn chairs.  We would have stayed longer except it was quite chilly – 59 degrees!  I know that’s not chilly for a lot of you, but it’s really cold for us!  So we only lasted an hour, even though I had 4 layers of clothes on, along with a fuzzy hat and gloves!  Tomorrow is another day and will hopefully be warmer.  The cool thing is that we can walk to the amphitheater/festival from our campsite.  On November 22^nd, they start the Festival of Lights here in the park; the entire park will be all lit up with Christmas lights from 11/22 until after the 1^st of the year.

Well, that’s enough rambling for today.  Once again, I want to thank you all so much for your love and support on this crazy journey of mine.  And thank you so much for all the wonderful blog comments, emails, cards, letters, and gifts.  Please know that it really means the world to me.  I read and take to heart everything that you write, and it really keeps me going!  Thank you so much!  Hugs to all of you!

You know you’re a cancer patient when….. you can shower faster than a man (because you have no hair to wash.....).

The big day!

To succeed in life, you need three things:  a wishbone, a backbone, and a funnybone.  ~Reba McEntire

Yes, today was the big day – my first radiation session and the start of “phase 3” of the treatment regimen.  It went fine.  The biggest hassle is going to be the travel time/time away from my work, but I’ll just have to deal with it.  I already notified the office I transcribe for and let them know I would be doing radiation every day (M-F) for 30 sessions.  They’re so kind to me and so understanding, and it’s no problem at all.  They just basically said, “If there’s anything we can do for you, Suzy, we’re here for you.  Don’t worry about the transcription; we know you’ll get it back to us as soon as you can.”  I’m so lucky to have this account – they’re just all so nice to me.  I’ve been with them for 6 years now, and I just hope the doctor doesn’t plan on retiring anytime soon (he’s exactly 3 weeks older than I am, so I think he’ll be working for awhile longer…..as will I; I WISH I could retire, but it’ll be awhile).

Last Thursday’s appointment was for some x-rays, final measurements, and the tattoos……and we got to meet “Hal” – the big machine that will be blasting me every day.  (Kenny nicknamed him Hal, which I didn’t get, but everyone who has seen 2001 Space Odyssey understood what he was talking about!).  The machine (which cost $4.5 million) and the vault (which cost another $1.5 million and is the lead-lined room – about a foot and a half thick – where Hal resides) were quite intimidating/impressive – it truly looks like something out of a SciFi movie.  It’s really high tech, state of the art, and supposed to be the absolute latest and greatest radiation equipment available.  I’m hoping they let me take a picture one of these days so you all can see this piece of equipment, although I doubt a photograph will do it justice.  The tattoos are simply little dots on my body that will help them line things up each time.    

Last Friday’s appointment was with Dr. “Always Late” Sprawls.  Once again, silly me thought that if I had the first appointment of the day, 9:00 a.m., he would be on time or maybe 5-10 minutes late.  Wrong.  He was 50 minutes late!!  How can that be?!  And then he spent at least half an hour with us, so imagine how far behind he was by the end of the day!  Anyway, he was his usual funny and calming self, and we had a great visit and didn’t mind the delay.  The appointment was mainly about the DVT/blood clot in my leg, but I also had some cancer-related questions.  The best news of the day was that he said I no longer had to wear the awful compression stockings!  I wanted to jump up and hug him!  I was SOOO happy to hear that.  He said to stay on the same warfarin (Coumadin) dose for now and have my INR checked again on Monday.  On Friday it was 2.1, which is fine (today, Monday, it was 2.5, which is perfect); I’ll have it checked again next Monday.  He said walking is the best thing for me right now, so I’ve been trying to do that every day, along with some bike riding.  The only problem with the walking is that my leg feels like it’s filled with cement!  It just feels like a big huge heavy load that I’m hauling around.  I suppose that will get better with time.  Both Dr. Sprawls and Dr. Siragusa (the vascular guy from Tennessee) said to do as much walking as possible, so I’m going to trust their opinions and go for it.    

As for the cancer-related questions I had, once again I asked him about having a PET scan to see if all this treatment is working.  And once again, he explained that there are too many false negatives or false positives, and it wouldn’t add anything to my treatment plan/survival rate, etc.  He explained to us about the studies done in Italy proving that it wouldn’t add anything to my survival rate.  He also said that he owns a PET scanner (I think he means the cancer center owns it, and consequently the doctors own it?) and that he would make money by having me get one, but he doesn’t believe it would be beneficial.  He said to go ahead and get my port removed (he set up an appointment with the surgeon for me), and that he’s SURE I’m cured of cancer.  He also said to me, “You are a winner, a survivor, a warrior.  The cancer doesn’t have a chance.”  He said the most important things for me right now are exercise, walking, bike riding, healthy eating, a positive attitude, and “relentless hope and optimism!”  He said the “test of time” is way better than any PET scans or all the other myriad of tests.  He also said that he can tell the difference between cancer and a cold; if I get feeling bad or feel like something isn’t right, see him, and we’ll figure it out.  He really makes a lot of sense to me (and Kenny, too) when he explains things.  If we don’t understand it, he’s always willing to answer more questions and offer more explanations.  

I’ve been feeling really good for the last several weeks, and I just can’t tell you how good it feels to feel good!  It’s really wonderful after so many months of feeling crappy.  I feel “normal” again – except for the “heavy leg,” the lack of hair/eyebrows/eyelashes, the black fingernails, the watery eyes, the runny nose, and the flat chest and fat stomach…..but those are all just minor little details that I can handle!  And they all should improve with time......except for the flat chest.  I’m just so happy to be feeling good.  Sure makes life a lot more enjoyable.  I’m sure I’ll have some SEs (side effects) from the radiation – fatigue and sunburn-like skin problems – but it won’t be anything like the chemo SEs.  It’s also wonderful to have my taste buds back again!  For the longest time, water tasted absolutely terrible (and so did everything else, but I was most upset about water), and now water tastes great again, and so does everything else!  It’s no longer just margaritas and ice cream that taste good!  Yahoo! 

Well, I guess it’s time for me to quit procrastinating and get some transcription done.  Hope all is well in your various corners of the world.  And I’m SO HAPPY that my family members in western CT finally got their power back after the freak Halloween weekend storm left them in the dark for a week! 

You know you’re a cancer patient when……you are checking in the mirror about how long your hair is at least once a day!  (Mine is getting there but still has a long ways to go – not ready to go without a bandana yet!)

       

Back to the rat race......

Laugh your heart out.  Dance in the rain.  Cherish the moment.  Ignore the pain.  Live, laugh, love.  Forgive and forget.  Life’s too short to be living with regrets.  – Beauty, Brains, and Beyond

We had a great time in St. Augustine with our good friends, Debbie and Bill.  Debbie and I did our best to support the local economy with some serious retail therapy (a.k.a. ‘shopping’) while the guys went for a bike ride on the beach and took the dogs for long walks, etc.  On Saturday, the weather wasn’t very nice in the morning so we went to Ripley’s Believe It Or Not museum, which was pretty interesting, and then to Harry’s Seafood for lunch (one of our favorite places).  Saturday evening we went on a Ghost Train Adventure, which also was pretty interesting, although we didn’t see much “paranormal” activity.  We all had EMF meters to measure said activity, but the meters weren’t too active.  It was fun anyway.  On Sunday morning, we went for a nice walk on the beach.  It was VERY windy and quite chilly but really beautiful….with hardly a soul on the beach.  Then we all went into town for another nice lunch at a Cuban restaurant and then we caught the tail end of the Halloween parade – lots of cute costumes on kids, dogs, and adults.  Debbie and Bill had to leave Sunday afternoon to head back to Merritt Island, so Kenny and I went to Sangrias where they have a 2^nd floor balcony overlooking St. George Street – the main pedestrian drag (no cars allowed).  It’s a great people-watching spot, so we got to see lots more costumes while having a glass of homemade Sangria and listening to some good live music.  Very fun afternoon.

Sadly, we had to pack up on Monday morning – in the rain – and head back to Brevard County ourselves.  It rained all the way home, but we arrived safely.  We actually stopped in Titusville and unhooked the car so I could go to my appointments.  Kenny continued on to Melbourne in the RV and got set up at our next campground.

Yes, it’s back to reality and the rat race of the medical world!  Yesterday I had 3 medical appointments – all at the same place, fortunately.  I had to have blood work (my INR dropped, which means another Coumadin adjustment), had to have my port flushed (needs to be done once a month), and had my pre-radiation ‘molding.’  As it turns out, the actual tattooing will come later this week or on Monday.  Right now I just have some blue crosses on my chest and abdomen, but they will actually be tattooing some “dots” in various places.  If I have to get a tattoo, it oughtta be something more interesting than a dot!  For the ‘molding,’ they rammed all this stuff up against me and then sucked the air out of it, which formed a kind of mold.  This is so I’ll be laying in the same position each time I go for a rad blast. 

They called me today and said I have to go in on Thursday for another pre-radiation appointment – for a “series of films” and possibly the tattooing?  And then on Friday I have an appointment with Dr. Sprawls about the DVT in my leg.  On Monday, radiation begins.  Oh, it was SO nice to be away from all of this for a few weeks!  I want to turn around and go back to the mountains!  No such luck. 

Our new campsite is pretty nice.  In fact, I think we have the best site in the park – nice and private and away from all the other sites.  Good bike riding and walking here.  And it will be a nice change of scenery for awhile.  We’ll stay here at least a month, maybe longer.  We’ll see how it goes. 

Kenny is anxious to go see his boat.  So he’ll go up to Merritt Island tomorrow and spend the day working on the boat.  Unfortunately, I have too much transcription to do to join him.  In fact, I’m pretty tired right now from typing most of the day today, so I’m going to head off to bed (with my Kindle, of course).  Hugs to everybody!

You know you’re a cancer patient when…… you see "BMX" and think bilateral mastectomy and not bicycle motocross racing.