Back in Florida now.....

The strength of a family, like the strength of an army, is in its loyalty to each other.  -- Mario Puzo

I’ve been meaning to get back on here to post a new blog entry, but time seems to have run away from me, and I can’t believe it has been over 2 weeks since I’ve posted.  It’s the old “no news is good news” thing – I don’t have a whole lot to report.

But I’ll begin by saying I had a fabulous 10 days in Maine with Mom, Freeland, and Nancy.  And, of course, the highlight of the visit was the wonderful celebration we had on the 14^th – celebrating Freeland’s 85^th birthday and the end of my cancer treatments – with 19 of us together for a day filled with fun and frivolity, good company, delicious food, and wonderful wine!  Oh my, it was so superb to have so many of us together.  I’ll try not to get too repetitious here because I know most of you read my last post.  But I have to say that I am STILL totally overwhelmed and quite emotional by what my amazing family and friends of the family did for me!  The medical bills are already starting to come in from various appointments I’ve had in January, and I have to say that all the stress of paying them has been alleviated!  I still can’t believe it!  I so clearly remember sitting on the couch at Mom and Freeland’s house when Nancy presented me with that big, beautiful purple card and the big, beautiful Bank of America check!  As I said in my last blog, I honestly thought the check said $1800 (no glasses on), and I thought to myself I’d better not say that out loud because there is NO WAY they are giving me a check of that magnitude!  So I nearly had a heart attack when I found it was $7800, not $1800! 

I knew we were celebrating the end of my cancer treatments, but in all honesty I was not expecting a card of any sort, much less one filled with loving messages from so many people, and I certainly wasn’t expecting a huge check to help with the medical bills!  At the very most, I thought maybe we’d have a toast – “Here’s to Suzy finishing 11 months of cancer treatment and to a better year ahead!  YAY!”  And we all take a sip of wine and go play some more ping pong or whatever!  So I was really flabbergasted by what actually transpired! 

Okay, I’m gonna start crying again, so I’d better get on another subject.  BUT THANK YOU ALL SO MUCH ONCE AGAIN FOR YOUR LOVE AND SUPPORT AND GENOROSITY!!!!

I’m back in Florida now.  Flew out of Bangor on 1/22 – it was 7 below zero(!) that morning as I was standing outside on the tarmac waiting to board the commuter plane to Philly.  And it was 78 (above zero!) when I landed in Orlando.  Kenny met me at the airport – so nice to see him – and we went to lunch at a little restaurant on the Banana River in Merritt Island.  Sat outside on that beautiful Sunday afternoon watching the porpoise swimming and playing in the river. 

My INR has been within range for 4 weeks in a row!  Yay!  Unfortunately, it is either at the high end or the low end of the range, so I still have to have it checked weekly….for now.  It’s not painful – just a finger stick – but it’s time consuming – travel time, waiting time, etc. 

I started my aromatase inhibitor (generic Femara) on 1/23.  So far, so good.  No side effects to speak of except some minor hot flashes.  Nothing I can’t deal with, though.  Eight pills down, 1817 left to go!  Eeeh gads!  That sounds terrible, doesn’t it?!

I have an appointment with an ophthalmologist on 2/10 for my watery eyes.  They’re not getting any better, and they’re driving me a little crazy – at times pouring down my cheeks like a freakin’ waterfall!  Hopefully he’ll have some suggestions for me, although Dr. Sprawls warned me that he might want to put stents in to help with the drainage.  I’m not sure I’m interested in that.  Might just have to continue on carrying hankies with me everywhere I go for wiping up the constant flow of tears.

Happy to report that I’m back to eating healthy (for the most part) – mainly protein and veggies – and back to exercising again.  I’ve been trying to ride my bike to the Pioneer Trail (15 minutes), walk the trail (35 minutes), and ride back to the RV (15 minutes).  On days that it’s too windy for a bike ride, I drive to the trail and walk the trail – it’s a beautiful walk.  Today I don’t feel like doing anything because I seem to be coming down with a cold.  Bummer.  It’s zapping my energy today.  Of course I keep reassuring myself that IT’S ONLY A COLD.  As anyone who has ever had cancer will tell you, every new ache, every pain, every illness scares the heck out of you, and you start imaging the worst.  HOWEVER, I am going to BANISH those negative thoughts from my brain.  It is ONLY a cold, and I will be feeling GREAT again in just a couple of days!  In fact, I’m starting to feel better already!

One final note here – a lot of you probably already saw the photo on Facebook with me “modeling” my new Sleevey Wonders®, but I have to post a picture for the benefit of those not on Facebook.  These are the coolest things.  I can’t wear sleeveless tops due to “arm dangle.”  Well, a high school classmate and friend of mine, Ruthann Greenblat, has come up with the perfect solution.  Simply put, they are sleeves that you wear underneath a sleeveless or strapless top or dress.  They can be used to hide arm dangle or to jazz up an outfit or just to add sleeves if you don’t feel like going sleeveless.   Check ‘em out at www.sleeveywonders.com.       

Hope everything is wonderful in your various corners of the world.  All is well here in Florida.  Sending LOTS OF HUGS to everybody! 

Me in my Sleevey Wonders (and sleeveless top)

My amazing family!!!

The family is one of nature's masterpieces.  ~George Santayana

My family is SOOOOOO amazing!!  I don’t even know where to begin.  As you all know, I’m up here in Maine – at the home of my wonderful parents with my totally awesome sister – to celebrate Freeland’s 85^th birthday and the end of my 11 months of breast cancer treatment, the start of a new year, and all good things.  I’ll tell you about the trip up here in a minute, but first I have to tell you something else.  There were going to be 17 of us here yesterday, which is so totally amazing.  But, on Friday night, Brenda (my beautiful niece) arrived at the door……..with her parents, Jeff and Wendy (my wonderful brother and sister-in-law)!!!!!!  They flew in from Oregon for the big celebration, totally unbeknownst to Nancy and me, and we were SOOOO surprised and so ecstatic!!  Wendy is also a breast cancer survivor and can totally relate to the journey I have been on this past year.  Well, adding Jeff and Wendy to the “guest list” was just a really wonderful surprise.  On Saturday morning, the house really came alive when so many wonderful others of my family arrived – stepmom Shirley, stepsister Becky and her husband George, stepsister Penny and her husband Zig and their son Abe, stepbrother Stuart and his wife Donna and their daughters Emma, Delia, and Lily, and Emma’s friend, Jill.  It was really awesome to all be together, and we had such a GREAT day!  We only wished the rest of the family could have been here with us. 

Now let me tell you about the NEXT surprise, if I can do so without crying!  We were all sitting around the living room getting caught up on each other’s stories, chatting, visiting, enjoying each other’s company, etc. when Nancy “called the meeting to order.”  She gave an incredibly touching and moving and heartfelt speech – that I totally wish I had recorded, but I had no idea this was going to happen – about the journey I had been on for the past year and about how everyone wished they could have helped me more or do some of the chemotherapy for me or taken some of the pain and stress away, etc.  (They all helped me more than they know….with all the love and support and good wishes and positive thinking and cards, emails, gifts, etc…..as did ALL of my family and ALL of my friends).  Anyway, Nancy then presented me with a HUGE card filled with messages of love from family and friends.  They had emailed the messages to Nancy, and she printed out each one and glued them to the inside of the card.  It is so beautiful!!!  And on the inside of the card, there was a beautiful purple envelope (purple is my new favorite color; the card is purple, too!) that said “Open Me.”  I followed the instructions and opened it and found a big beautiful check inside!  I didn’t have my glasses on, but I could see 4 (yes, FOUR) digits before the 2 zeroes at the end – meaning the check was in the 4 figures!  I squinted really hard, and it looked like $1800 to me, and I was TOTALLY blown away!!!  But Penny leaned over and said, “That says $7800!”  OMG!!!!  I could NOT believe it!!  I was dumbfounded and speechless!  I honestly couldn’t speak.  And yes, I was crying!  And yes, I am crying now as I write this.  Nancy explained to me that they all…..and MANY others who couldn’t be at the gathering…..had hoped to chip in and raise enough money to meet my deductible for me!  My Uncle John in Arizona played a big role in this, too, by bringing up the idea with Nancy and Mom and by raising funds on “his side” of the family.  You have a heart of gold, Uncle John! 

The whole thing is just so amazing!  I’m still in shock.  The outpouring of love (and money!) is beyond anything I could ever imagine!  Obviously, they not only met my deductible; they far surpassed it!  And they all said they want Kenny and me to take a trip and do something fun with the “extra” money, which we will definitely plan on doing!  I can’t believe I don’t have to worry about my deductible this year – a huge burden has been lifted off my shoulders.  And I can’t believe there is enough money left over for us to take a really nice trip.  I couldn’t have made this journey without Kenny, and he has been by my side every step of the way, so it is going to be awesome to be feeling so good and go somewhere really special……compliments of my incredible family and friends.

I need to take a little break here and compose myself.  The tears are flowing, and everything is a big blur right now.  I’ll be back a little later.

Okay, I’m back now, but it’s the next day (Monday).  I did pull myself together yesterday, but I just couldn’t write anymore.  I have to admit that I cried myself to sleep last night.  Don’t get the wrong impression; I’m not a big huge crybaby, but I’m just so overwhelmed by all the love.  I don’t know how to explain it.  They weren’t tears of sorrow or anger; they were tears of happiness, joy, love, amazement, gratitude…..

The party continued on in full force for the rest of the afternoon and evening on Saturday – so much love and camaraderie in the house.  We played ping pong, we went for a nice walk in 20-degree weather, we drank excellent wine that the Bodycoats and Ziarniks brought, we took zillions of keepsake photos, we had a delicious lunch followed later on by delicious appetizers – compliments of Mom.  And then Mom and Freeland treated us to a superb dinner of lobster and steamers (and Mom made a big pot of beef stew and veggie chili for those who didn’t want lobster – who doesn’t like lobster??!!) with 2 delicious Mom-made birthday cakes for Freeland’s birthday.  I won’t tell you how many bottles of wine were consumed that day and evening, but we all had a fabulous time together!!  It was a VERY memorable day.

Oh yeah, I was going to tell you about our trip to Maine.  I flew out of Orlando on 1/11 – wearing thigh-high compression stockings on my legs and a compression sleeve on my left arm, combat boots on my feet to deal with snow, and a down jacket in my bag.  I really needed to get out of Orlando with all this “hot gear.”  (Compression stockings and sleeves are nice and warm in cold weather…..but they are also extremely warm in hot weather – i.e., Florida).  We stopped in Baltimore, which is where Nancy got on the plane (she had flown from San Diego that morning).  It was SOOOOO nice to see her walk aboard the plane, and the flight to Manchester went zipping by.  We got in around 6:30 in the evening, picked up our rental car, and checked into the Towne Place Suites.  Then we went to the grocery store and got a couple of salads and some wine and spent a relaxing evening in our room.  When we woke up in the morning, it was a “winter wonderland” outside – so beautiful with the whole landscape covered in fluffy white snow, and it was still coming down like crazy.  The only drawback was that we had to DRIVE  in the “white stuff” for 4 hours to get to Mom and Freeland’s house – well, that’s 4 hours on a GOOD day.  We got on the road around 9:00 a.m. after a brief workout in the fitness center at the hotel, and the driving conditions rapidly deteriorated.  Before we even got to Portland (Maine), it had become white-out conditions, and we couldn’t even see where we were supposed to be on the road.  Nancy did a most excellent job of driving and tried to stay behind an 18-wheeler as much as she could – they seemed to be doing the best job of driving.  The speed limit on I-95 was 45 MPH, but we could really only maintain about 35 MPH; on I-295, we could only do 25 MPH.  By the time we reached Portland, the windshield wipers were totally caked with ice and so the windshield was a big huge blur – could hardly see out.  We got off the highway in downtown Portland and had to roll down our windows to try to see where we were going – REALLY scary.  We found a McDonald’s, pulled into the parking lot, and heaved a HUGE sigh of relief to be safely stopped for a little while.  We came to the realization that we could go no further.  So we made a bunch of phone calls, found a motel not too far away, called Mom and Freeland and told them we wouldn’t make it until the next day, and then went and checked into the Residence Inn and didn’t leave for the rest of the day.  First we stopped at the Christmas Tree Shop and picked up 2 decks of cards and a cribbage board!  It continued to snow for the rest of the day, and I think Portland got about 10 inches that day!  We had wanted some snow during our vacation, but we envisioned sitting by the fireplace at Mom and Free’s watching it snow out the window.  Driving in it was NOT in the picture!! 

On Friday (the 13^th!), the roads were plowed and sanded, and we ventured out again.  We met Mom and Free in Camden where they treated us to a delicious lunch at the Waterfront Restaurant for Freeland’s (actual) birthday.  And then we drove the rest of the way to their house after lunch.  It felt so good to finally arrive here! 

I guess I should fill you in on some of the “medical” things that have transpired since I last wrote in my blog…..if I can remember anything…..LOL! 

On January 6^th, I had an appointment with the radiation oncologist and also had to get my INR rechecked.  They are SO nice to me at Space Coast Cancer Center.  When I walked into the waiting room, there must have been 6 other people in there, but they called me back first.  They checked my INR first, and it was 1.8.  Just can never seem to get it in range.  They upped the dose to 6.5 mg and said to recheck it on 1/11 before leaving for Maine.  After they did the INR, they sent me to the radiation waiting room, where another 6 people were waiting – and they called me back first again!  It was my lucky day!  And Karissa told me that when Cathy, the nurse practitioner saw my name on the schedule she was so excited and said, “Oh good!  I can’t wait to see her!”  It made me feel so good.  And Cathy gave me a big hug when she walked into the room!  So nice!  She told me my burns were healing beautifully and I could stop the dreaded soaking! YAY!!!  She said to keep using the Silvadene cream on one small area for a few more days.  Now my burns are totally healed, and I don’t have to do anything to them while I’m here in Maine….or after I get home, for that matter.  I’m done!  And what a marvelous feeling.  I think it took the burns about 3 weeks to heal. 

Kenny says I haven’t stopped smiling since my last day of radiation, and I do believe he’s right!  I feel like a different person.  I feel so good and so happy now that everything is behind me!

By the way, INR stands for International Normalized Ratio.  Several people have asked me that, and I couldn’t remember.  The proper name for the blood test is PT INR; the PT stands for prothrombin time.  The test measures the amount of time it takes for the blood to clot. 

My hair is coming back much better since I had it shaved off again.  In fact, I sometimes even go without head gear now!  I think I had my bandana off for a good part of the party on Saturday.  I still think it looks a little goofy, but I got several compliments on the chic look!

I did have a DEXA scan and chest x-ray at the end of December but can’t remember if I reported on those results.  The DEXA scan revealed that I have osteoporosis in the spine and osteopenia in the hip.  I don’t want to get on yet more drugs, so I’ll be consulting my chiropractor/clinical nutritionist on the best route to go with that.  In fact, he has already given me some good advice – calcium, vitamin D, vitamin K, and weight-bearing exercise.  I can’t do the vitamin K yet because of the Coumadin, but hopefully I can do that as soon as I’m done with the Coumadin.

Well, I think perhaps I have rambled on enough for today.  I just want to thank everybody who traveled great distances to be here this past weekend – driving for hours/hundreds of miles, flying from the west coast/thousands of miles – and for making Saturday an awesome celebration!  Thank you to Mom and Freeland for buying my plane ticket(!) and for opening up your home and arms and hearts to 19 people for a day of frivolity and for supplying all the delicious food.  Thank you to everyone who brought beer and wine for the occasion.  Thank you to my most amazing sister for organizing/coordinating the whole event and for putting the beautiful card together, for the incredible speech, and for making this trip with me.  AND THANK YOU SO MUCH TO EVERYONE FOR THE HEARTFELT MESSAGES IN THE CARD AND FOR THE EXTREMELY GENEROUS CHECK – FOR MEETING MY DEDUCTIBLE AND WAY BEYOND!!  I am so happy to be a part of this huge, loving, supportive, unbelievable family!  I can’t even begin to express my gratitude for what you all have done for me….and Kenny….now, and during this entire journey.  THANK YOU SO MUCH!!  I LOVE YOU ALL SO MUCH!!

The beautiful snow!

The ugly snow!

Jeff, Nancy, and me -- after Jeff surprised us with his presence!

The Gathering!  Thank you all so much for being here!

Mom and Freeland -- the host and hostess of the magnificent celebration

Nancy giving her awesome speech

My beautiful card

The loving messages inside the card

Shirley and me

Mom, Freeland, Jeff, Nancy, and me

Becky and me

Penny and me

Stuart and Nancy

HAPPY NEW YEAR ONE AND ALL!!!!

The pessimist sees difficulty in every opportunity.  The optimist sees the opportunity in every difficulty.  – Winston Churchill

GOODBYE 2011!  HELLO 2012!!  I was so happy to kiss 2011 goodbye.  It was a very tough year, as you all know, and I’m really looking forward to 2012 being a great year with all kinds of things to look forward to – heading to Maine next week where I’ll get to spend precious quality time with at least 15 family members (can’t wait!), Mom and Freeland will be coming to Cocoa Beach for the whole month of March (sister Nancy will be here for a big chunk of that, too!), we have a Workamper position lined up at one of our favorite parks – Anastasia State Park in St. Augustine – for May, June, and July…..and who knows what else the year has in store.  Road trip out west in the summer/fall??  Suffice it to say I am very excited about this year.  It’s time to put the “cancer stuff” behind me and forge on, move forward, LIVE LIFE AGAIN! 

I’m feeling GREAT, and it’s so wonderful to be able to say that.  I’m still dealing with the radiation burns, but they’re healing.  I got permission via phone on Monday to stop soaking the chest area and just continue with the under-arm burns.  I’ll see the radiation oncologist on Friday for a followup visit, and hopefully I’ll get permission to stop the soaking altogether.  I really don’t want to have to deal with that on my “vacation” in Maine (not a “true” vacation” because I still have to work, although “my girls” are going to jump in and cover some of it for me so I can enjoy the quality family time).  If I DO have to continue with burn treatment, my wonderful sister, Nancy, has already stepped up to the plate and offered to take over for Kenny and do all the soaking and bandaging (love you, Nance!), but I truly hope all the burns will be healed by then.

Unfortunately, I’m still having problems with my INR.  The dang numbers just won’t cooperate.  Last Wednesday it was 3.5!  Geez!  So they lowered my warfarin dose….again…..and I have to have it checked again on Friday.  I guess I’ll be having that checked in Maine since we can’t seem to get it stabilized – 3 months now since I developed the DVT; in fact, it was 3 months ago today. 

I did get my Femara (aromatase inhibitor) prescription filled and will start that after I get back from Maine.  I’m truly hoping there will be NO side effects from it.  I’ve read some horror stories online.  I should STOP reading that stuff because maybe I won’t experience ANY of the side effects.  One side effect I DID experience was SHOCK at the cost of the freakin’ drug.  I lucked out and found a pharmacy where I can get it for $40/month – such a deal!  Walmart wanted $1288/month and Hobbs Pharmacy wanted $1516/month!  Yes, you read it right – per month!!  Can you believe it?!  I’m not sure how the other pharmacy (located in Cocoa Beach) can sell it for $40/month, but they will obviously be getting my business.

Please pray/cross your fingers/think positive thoughts/whatever…..for no blizzards/snowstorms on the east coast January 11-16^th (when my sister and I and lots of family members will be traveling to/from Maine) and January 22^nd (when I’ll be flying out of Maine back to Florida).

It seems to me I had all kinds of things to write about, but I just can’t remember what they were!  If I think of them, I’ll be back.

Until then, HAPPY NEW YEAR, everybody!  I hope it’s a wonderful year for everybody.  Wishing you all good things – HEALTH, happiness, prosperity, peace, joy, love….. 

You know you’re a cancer patient when you can't remember the last time you bought razors!

New Year's Day at Cocoa Beach (New Year's resolution -- lose weight, grow hair!)

HAPPY CHRISTMAS EVE!!

Don't be afraid to give your best to what seemingly are small jobs.  Every time you conquer one it makes you that much stronger.  If you do the little jobs well, the big ones will tend to take care of themselves.  ~Dale Carnegie

Je suis tout fini!  Mimi ni wote kumaliza!  (That’s French and Swahili for “I am all finished!”)  I was in French and Swahili mode this morning because we’re trying to think of a name for our boat, so I was trying to come up with something cute in French or Swahili – no luck.  We’re open to suggestions in English or any language.  It can’t be too long because the transom isn’t too wide. 

Anyway, that’s neither here nor there!  I finished radiation therapy on 12/20, and I am so happy to be done with it.  They even gave me a cute diploma signed by radiation oncologist and the nurses and technicians at the Viera center!  I’m still coping with some really nasty burns, which is quite a drag, but they ARE actually starting to heal now that the assault of the radiation has been terminated.  I actually had to go back to Space Coast Cancer Center on Wednesday so the nurse practitioner could look at the wounds and make sure they’re not getting infected (they’re not).  She was really nice and gave us some pointers on using the Domeboro soaks and the Silvadene cream.  It’s a tedious process; it takes Kenny about an hour per session to remove the bandages and then soak the various areas and then re-bandage them.  He’s such a trooper.  I just lay on the bed on a doubled-up towel, and he puts a huge pad (5 x 9”) soaked in the Domeboro powder on my chest area and then re-soaks the area every few minutes.  Then I have to roll onto my side so he can do the same process on the burns under my arm.  When we’re all done soaking, he has to apply the Silvadene cream (I have a huge tub of it now) and then apply new bandages.  I now have 4 large (3 x 4”) pads covering the 4 worst burns.  I’m tired of it all, but at least we’re finally starting to see some progress/healing.

Still having problems getting my INR stabilized.  On 12/16/11 it was 1.5, but I didn’t actually get those results until 12/19 because it was too low to register on their machine so they had to do a regular blood draw (instead of a finger prick) and send it across the hall to the lab.  They said somebody would call me that afternoon with the results.  Nobody ever did.  And the office was closed that afternoon for their Christmas lunch, so I couldn’t call them.  Anyway, I got the results on Monday and she said to increase my dose to 7 mg/day.  Then I had it rechecked on Wednesday -- it was 3.0!  Geez!  Enough already!  (It’s supposed to be between 2 and 3).  Back down to 6.5 mg/day and recheck on 12/28. 

My hair is coming back, but it’s dreadful.  I can’t explain it other than to say it is:  gravity-defying, reach-for-the-ceiling, looks-like-I-stuck-my-finger-in-a-socket, mad-professor-type hair!  It sticks straight up in places, straight out in others, and has bald patches in others.  Seriously contemplating shaving my head again and starting over.  In my online support group, some of the other women did that and said it came in much better the second time.  What have I got to lose?!  Another woman said she just cut off about half an inch, all the funky curls, and then it started laying down better.  I think I’ll try that first.  Meanwhile, I’ll just continue to wear bandanas – in every color imaginable! 

Well, it is NICE to have my body back and feel in control once again.  They cut, poisoned, and burned it all they wanted.  I didn’t exactly go “there” kicking and screaming.  I did have my serious doubts and reservations about going the “conventional” route, but “they” (the big “they”) dangled the bait and convinced me that that was what I needed to do.  I bit, and the rest is history.  I don’t really have any real regrets at this point, although it was a very rough journey – for me, for Kenny, and for my family.  I’m absolutely convinced the cancer is GONE and very hopeful that it will NEVER EVER return.

Now it’s time for me to take charge of my body again and start doing healthy things once again, which I’m actually very much looking forward to.  Eating healthy and exercising are very high on the priority list for the new year!

We’re enjoying a relaxing Christmas Eve afternoon, and I hope you all are, too.  Kenny just finished doing my soaking and bandaging; we watched a Christmas movie while doing it.  I’ve already cut up the veggies for dinner tonight, which is going to be lobster, over-roasted veggies, and wild rice, with a nice bottle of Cabernet.  Tomorrow morning we will have lobster omelettes for breakfast.  Dinner tomorrow afternoon will be a turkey breast (cooked in the crockpot), awesome sausage and sage stuffing with sausage, celery, onions, cranberries, apples, etc. (I already made it), mashed sweet potatoes with honey and applesauce, little white onions, and steamed veggies.   Now we’re going to go outside and enjoy what’s left of the beautiful afternoon – it’s sunny and 80 degrees here! 

I hope you all have a very Merry Christmas and a wonderful New Year!  Thank you ever so much for cheering me on this past year – for all your love and support and encouragement!  Knowing that you’re all out there being my cheerleaders really helps me tremendously!  It helps me maintain a positive attitude and stay focused.  Just because my treatment is over doesn’t mean my “battle” is over.  Cancer changes your life forever.  And I have to remain vigilant and conscientious about my lifestyle choices, etc.  So keep sending those positive thoughts!  We sure do appreciate them!  HUGS TO EVERYBODY! 

You know you’re a cancer patient……when you let nearly everyone who comments on your "cute, daring hairstyle" know that this isn't a fashion statement. I am so ready to have my "old" hair back!

My diploma

Our Christmas tree

Some of our Christmas decorations

The dogs on Christmas Eve

Christmas Eve

There's a light at the end of the tunnel!

Strength does not come from winning.  Your struggles develop your strengths.  When you go through hardships and decide not to surrender, that is strength.  – Mahatma Gandhi

Haven’t been on here in awhile.  Sorry.  Things got a little hectic with daily radiation, work, and Christmas – decorating, baking, shopping, etc.  Only 4 more rads to go!  I can see the light at the end of the tunnel!  And I will be SO glad when it’s over.  It will be so nice not to make the commute to Viera every day, and it will be so good to give my body a break and give my radiation burn a chance to heal.  I now have a pretty nasty 2^nd degree burn on my upper chest – an oozing, bleeding, stinging, itching mess.  A couple of days ago I was getting ready to take a shower, so I went to take the gauze off that Melissa had put on after my treatment.  It was stuck to the burn, so I had to pull it off, which hurt like hell, and then it just started really bleeding – running down my chest and stomach (I bleed easily now that I’m on warfarin).  What a mess!  I decided a shower was going to hurt too much, so I said screw it.  Then I had to get Kenny to clean up the wound and re-dress it – he’s good at that; I’m not.  Fortunately, Tuesday was the last day they zapped the area with the bad burn – thank God!  Now maybe it will start healing.  I saw Dr. Bryant (radiation onco) yesterday, and she told me to get some Domeboro soaks and soak the burn in order to dry it out.  How does soaking something dry it out??!!   It must be along the same lines as the tears dripping off my cheeks are because I have a dry eye problem!!  Anyway, I will comply with her recommendations, although it’s not too enjoyable. 

I also have a burn on my back now, although it’s not a raw wound – just an itchy red area.  Yup, the zapper went all the way through me, which apparently is normal.  Man, this is so much fun.  I sure can’t wait until all this crap is over.

I saw Dr. Sprawls on Tuesday – yes, he was late.  Had to wait an hour and a half to see him.  But he was his usual kindhearted, jovial self, so I was okay with it.  I had a plethora of questions for him – a typed list of 20 questions, to be exact.  He read each question and answered them all.  Another one of Dr. Sprawls’ fine qualities is that he is honest and doesn’t beat around the bush.  He tells it like it is.  Of course, honesty……or the truth……isn’t always what you want to hear.   Here is my list of questions, along with his answers:

• How long on Coumadin?  3-6 months
• How often INR checked?  Every 1-2 weeks until stabilized
• How do I get rid of blood clot?  Can’t
• When will my leg stop being so big?  Never
• Okay to fly to Maine in January?  No problem; just drink a ton of water before you get on the plane and have a drink on the plane so you’re constantly getting up to pee; i.e., moving around a lot.  Walk up to the first class bathroom where they’ll throw you out, so you’ll have to walk all the way to the back.  Keep moving.
• What can I take for occasional headaches while on Coumadin?  Tylenol
• If I have a colonoscopy, I’ll have to stop Coumadin again.  Will I have to do Fragmin shots?  Maybe, maybe not.  Might just be able to stop the Coumadin and restart it again.
• Arimidex versus Femara versus Aromasin – pros/cons/side effects (Cocoa Beach Pharmacy) – We’re going to try Femara.  (This is the aromatase inhibitor – AI – that I have to be on for 5 years)
• Is generic okay?  Yes  (These drugs can be very expensive, and I have no Rx insurance)
• When do I start it?  Can I wait until I get back from Maine?  Yes, after Maine is fine.
• It feels so good to feel so good.  Now are we going to mess it up with an AI?  Hopefully not.  Maybe you won’t have any side effects.
• Fingernails?  (They’re still really ugly – black and blue – and I’ve lost 3 fingernails so far, with more to follow).  They’ll get better; it just takes time.
• Eyes constantly watering/nose constantly running.  Will they stop?  Yes, but it takes time.  If they don’t get better, I will send you to an eye doctor, and they might want to put stents in to help with the drainage.  (No thank you!)
• Odds of recurrence or don’t I want to know?  At first he said, “The odds are in your favor.”  And then he looked at my file again and said, “Never mind.  I forgot about the lymph nodes.  You don’t want to know.”  He continued by saying, “The odds are against you.”  But he reiterated the 3 things that will improve my odds – increase exercise, decrease alcohol, and maintain ideal body weight.  And he said, “Most importantly, you must BELIEVE.  Believe that cancer will NOT return to your body. Fill yourself with relentless hope and optimism.  Don’t even allow negative thoughts to enter your mind.”
• CT for lung nodule seen on original PET scan?  If it was cancer, would the chemo and radiation have wiped it out?  If it was you (or your wife), what would you do?  Get a chest x-ray (much less radiation than a CT)
• Had port removed – still feels like it’s in there.  It’s scar tissue.  Quit whining.  (I said, “I’m not whining, just asking…..lol)
• What is my cancerversary date?  Date of DX?  Date of last treatment?  Date of the surgery – when the cancer left your body (2/25/11)
• What about getting a DEXA scan prior to starting the AI?  Who does ‘em?  By all means.  Good idea.  Wuesthoff Hospital can do it.  (A side effect of the AI is bone loss)
• When I get sick, do I see you or PCP?  We’ve lived in Brevard County for 24 years, and I don’t think I’ve been to a doctor 3 times in 24 years….until this year.  Didn’t even have a PCP until this year.  Doctors have not been part of my repertoire until this year.  Go to your PCP.  However, if it’s something that won’t go away, come see me.  I can tell the difference between a cold and cancer.  If you’re walking around dragging your leg, come see me.

So there you have it.  Bluntness and all.  He’s really a great guy, and we do a lot of joking around and laughing amidst all the bluntness and truths that I don’t want to hear.  I was really upset about “The odds are against you,” but in the back of my mind I knew that because of all the positive lymph nodes.  It just hurts to hear it.  So I guess I shouldn’t have asked…… 

After the holidays, I need to get back in full swing with the “increase exercise, decrease alcohol, and maintain ideal body weight” thing.  Well, first I have to REACH my ideal body weight.  I did lose 30 pounds this year, which is a good start, but I would like to lose about 20 more.  I also cut way back on alcohol consumption – a glass of wine a day or less (only straying occasionally…..).  I haven’t been too good with the exercise part lately.  During chemo I felt like crap all the time and didn’t feel like doing anything other than what I had to do; exercise didn’t fit into the program too often.  Now the radiation is so time-consuming, it’s hard to juggle the daily appointments and all my work (and Christmas stuff).  So once again, exercise rarely makes it to the top of the list.  HOWEVER, I’ve decided that in the New Year I will be turning over a new leaf.  I’m going to get back to eating healthy – somehow I strayed from that during my “chemo cravings” when the only things that tasted good were margaritas and ice cream!  Carbs and junk food tasted okay.  Protein, veggies, and water tasted terrible.  Anyway, we’re vowing to go back to protein and veggies (after the holidays!).  As for the exercise, I have decided to use the time that I would normally have gone to radiation for biking, walking, working out, etc.  I’ve had to allow 2 hours minimum for travel time and the radiation treatment (usually more if I have to wait for the ‘doctor on site’ or get gas or groceries on the way home)…..and I still managed to get my work done.  So now I’m going to take that time slot and force myself to get up from my work and go for a bike ride and a walk.  I’m going to try to ride my bike to the Pioneer Trail (2.6 miles each way) and then walk the trail (1.1 miles each way).  That should be a good start anyway. 

Oh yeah, I think I’ll start all this after I get back from Maine in mid-January.  I am SOOOOO excited to be going to Maine for 10 days.  At first it was just going to be my sister, Nancy, and me going up there to visit Mom and stepdad Freeland and to celebrate Freeland’s 85^th birthday.  Now it turns out I’m going to get to see so much more family, and I’m really excited about it.  My stepmom Shirley, stepsister Becky and husband George, stepsister Penny and husband Zig and son Abe, stepbrother Stuart and wife Donna and 3 daughters Emma, Delia, and Lily, and my niece Brenda – are ALL going to be there, which is going to be so awesome!  It turns out they were trying to keep it a surprise for me, but it was going to be tough because Nancy and I get there a couple of days before everyone else, and we need to stock up on food, drinks, etc.  Anyway, they let the cat out of the bag, and I’m just ecstatic about the whole thing.  We’re not only celebrating Freeland’s 85^th birthday but also the end of my treatment and “new beginnings,” etc.  Everyone (except Brenda) has to travel for 6-7 hours to get there, so I can’t tell you how much I appreciate the effort you all are making.  It will be so wonderful to see you all!! 

Well, I think maybe I’ve rambled on enough this morning.  I must put together a cookie platter to take to the fine folks at Space Coast Cancer Center – ‘tis the season to eat unhealthy, yummy-tasting, decadent things!

Just in case I don’t get back here before Christmas – Merry Christmas to all of you.  And I hope you have a wonderful 2012!  I will be so happy to kiss 2011 goodbye!  It has been a very long year – this roller coaster journey of mine started in January – and we’re very much looking forward to a happier and healthier 2012.  Wishing you all a happy and healthy 2012, too!  Hugs from Florida!

More than half way through radiation!

My life has a superb cast but I can't figure out the plot. -- unknown

I’ve been feeling so good and so “normal” that I totally forget about writing in my blog!  Just happened to think of it.  It will probably be pretty short because I don’t have much to report.  It was a relatively uneventful week as far as radiation goes.  It all went pretty smoothly, even on the 3 days Dr. Sprawls was the “doctor on site.”  In fact, he was EARLY on one of the days!  I couldn’t believe my eyes…..and told him so.  He laughed.  I was supposed to see Dr. Bryant (radiation onco) on Wednesday, but she was out sick with laryngitis, so the appointment was rescheduled to Friday, but she was still out sick.  Guess I’ll see her this week.  I want to show her the itchy rash/burn I have all over my chest and see if there’s something a little more effective to use on it.  I had been using aloe every day.  On Friday, Melissa (one of the techs) gave me some samples of an ointment to try.  It helps but doesn’t alleviate the itching for very long. 

I had my INR checked again on Friday, and it was low at 1.4 (supposed to be between 2 and 3).  Not sure why it was low, but they upped my warfarin dose to 6 mg/day, and I’ll have to have the INR checked again next Friday. 

On Friday we also changed campgrounds – moved from Wickham Park in Melbourne back up to Kars Park in Merritt Island.  We really enjoyed our stay at Wickham Park, but the snowbirds were starting to take over, and we couldn’t keep our site past Dec. 2^nd.  It’s good to be back up in the central part of the county again.  I think it will take me about 15-20 minutes longer each way to drive to radiation, but I only have 12 more sessions left, so I think I can handle it.  Yup, 18 down and 12 to go!  Woo hoo!!

Some friends of ours from the Keys came to visit us Friday afternoon, which was fun.  We hadn’t seen them in several years, so it was fun getting caught up on things. 

Our good friends, Barbara and Brian, brought their RV to Kars for the weekend, too, so it’s been fun spending time with them.  Barbara and I went to some yard sales yesterday and then did a little “retail therapy.”  Barbara found a fondue pot at one of the yard sales, so we cooked shrimp in that last night, which was delicious.  Brian cooked some steaks on the grill, and we had salad and steamed veggies with the “surf and turf.”  Sat outside by the river and had a wonderful evening.  Today we went to the Cocoa Village Craft Fair and had fun walking around there doing some Christmas shopping. 

And now I can’t believe it’s Sunday night already and the weekend is just about over.  WAAAAHHHH!  How come the weekends go so fast??  Oh to be retired……can’t wait for the day…….  I love my job, though, so I’m not going to complain (too much…..)

I guess that’s about it for now folks.  Not much other news to report.  Hugs to everybody!

You know you’re a breast cancer patient when……your chest is flatter than your stomach!

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??