Road trip coming up!!

Life is like sailing.  You can use any wind to go in any direction.  -- unknown

This will just be a brief update.  Hah!  Let’s see if I can pull that off!  I’m not sure I know how to be brief….LOL! 

As most of you know by now, I had the repeat D-Dimer test…..in the hopes that the first one was a false positive.  Unfortunately, the second one came back positive, too, albeit slightly better than the first (1.17 as opposed to 1.2; negligible difference really).  Thank you all so much for thinking all those positive thoughts and singing the 0.3 mantras for me!  It was a valiant effort, and I sure do appreciate it.  I had so many questions for Dr. Sprawls about this whole thing, so I called his office on Monday morning (8/20) and was able to get in to see him the next morning.  And I pounded him with questions.  Too many details to go into here.  I asked him how high D-Dimer results could go, and he said 15-20, so I concluded (and he concurred) that 1.17 wasn’t all that bad (but he did point out that it's almost 3 times the upper limit of normal).  My most important question was whether or not I could still make the upcoming road trip (and flights) with Nancy, which involves 6 days in the car and 3 days in airports/airplanes.  He said it was okay, which is all I wanted to hear!!  I think I pretty much forgot everything else he said after that because my mind was already “…..on the road again….”  He did say I need to take precautions – we MUST get out and walk around every couple of hours.  Elevating my leg and/or flexing it while sitting would help.  Ice might help when possible.  Wear compression stockings (I have one for each leg and one for my left arm; the arm one is due to the possibility of lymphedema caused by flying).  Oh, the other great news was that I don’t have to do the Lovenox.  He strongly encouraged it, but I opted not to do it, and he was okay with it.  I DO have to do the Coumadin for 6 more months (minimum), which I’m not happy about, and I’ll have to have weekly INR checks to make sure the Coumadin dosage is correct.  I don’t even have to do the prophylactic Lovenox before the long days in the car or planes because I will be sufficiently anticoagulated from the Coumadin by the time we start our trip (9/20).  Oh, and I DO have to wear a helmet when bike riding now (ugh!) due to the risk of a bleeding head injury if I crashed and burned while on Coumadin. 

I got my temporary crown on tooth #4 last week.  And I will start the Zometa infusions on Friday of this week.  It turns out I don’t have to wait until all of the dental work is done; I just had to get the extractions out of the way. 

Getting drenched with the outer bands of Tropical Storm Isaac at the moment!  Nasty weather, but at least the storm is staying far to the west of us.

Okay, I’m going to stick to my words and be brief (relatively).  That’s about it for now, folks.  As always, thank you all SO VERY MUCH for all your love and support!! 

Sing it Willie Nelson……

On the road again
Just can't wait to get on the road again

On the road again
Goin' places that I've never been
Seein' things that I may never see again
And I can't wait to get on the road again……

Life is good......

We can’t always choose the music life plays for us, but we can choose how we dance to it.  – Unknown.

I’m BAAAAAACK!!  Yup, it’s me.  Been awhile, eh?!!  I took a mighty long hiatus from blogging.  Sorry ‘bout that.  Truth be known – there hasn’t been much to write about, which is a GOOD thing.  Well, I could find plenty to write about, but this blog is really about “No More Bras” and my journey with breast cancer, and I’m so happy to say that there hasn’t been much at all to write about along those lines.  I like to consider “that” a thing of the past.  I have moved on and really don’t focus much at all on it anymore, which is a wonderful feeling.  However, every once in awhile, something brings back the reality of it all or, rather, I’m somehow once again immersed in the medical throes of it all, which is what has happened this past week.  Don’t panic……nothing major……

We returned from our fabulous 3 months in St. Augustine on August 1^st.  Nice to get back to Merritt Island but hated to leave that beautiful area.  I had scheduled several necessary appointments shortly after our return.  The first (and probably most important!) appointment was with my wonderful hairstylist, Lisa, who did a great job of fixing the hair that I have hated for the last 4 months.  She colored it, highlighted it, cut it, and styled it……and I am SO much happier.  It’s still hard for me to get used to how curly and short it is, but I really like how easy it is to “maintain” when it’s short. 

The next appointment was on Monday, August 6^th, with Dr. Sprawls for a followup visit and blood work.  My appointment was for 9:00, they put me in the room at 8:58, and Dr. Sprawls walked in at 9:05!  Amazing, eh?!  AND…..he spent about 45 minutes with me!!  And I’m not even sick.  I felt sorry for the poor people he kept waiting on my behalf, but I felt honored that he spent so much time with me.  We talked about various things, with most of the talk centering on the DVT (blood clot) still present in my leg.  I told him about my upcoming road trip (combined with several airplane flights), which he said was fine as long as I did Lovenox injections prophylactically each morning before a long day in the car or in the air.  Not Lovenox injections!!  UGH!!  Okay, I agreed to it because I don’t want ANYTHING to jeopardize this trip (which I’ll tell you more about in a minute).  He did an exam, and said everything is fine.  He said he wants to follow me more closely than most patients; i.e., he wants to see me in 4 months instead of the usual 6 – I think because of the DVT and because of the staging of my breast cancer.  SO, my next appointment is for blood work 12/14 and a followup visit 12/21. 

On Tuesday, I had a dentist appointment to discuss the tooth I broke while in St. Augustine and to finalize plans for the other 3 problem teeth.  Unfortunately, the tooth I broke was separate from the others – sure would have been nice if it was one of the ones that was already a problem.  But, no, we had to add a fourth tooth to the mix.  Of course, it will need a crown with buildup (cha ching).  And we concluded that I would have teeth numbers 1 (a wisdom tooth) and 15 (a molar) pulled (I had already had a consultation with an oral surgeon in July); once #1 was out of the way, he could fill the cavity in #2. 

On Wednesday, I called Space Coast Cancer Center and requested a copy of the results of Monday’s blood work be faxed to me.  I read through it and noticed the D-Dimer test was elevated at 1.2 (range is less than 0.5).  That kinda freaked me out because that’s the test that has to do with my DVT, although I’m not real knowledgeable about what exactly it all means, etc.  I just knew it was not good news.  And I was especially concerned because I was scheduled to have my 2 teeth pulled on Thursday morning, and I didn’t know if this would affect that.  I called SCCC back and asked them about it.  The nurse said she would call Dr. Sprawls and get back to me.  He said it was fine to go ahead with the oral surgery and that he would call me and discuss the D-Dimer results.

On Thursday, Dr. Sprawls called me just before I was leaving to go have the teeth yanked.  Yes, the D-Dimer is positive, and he wants me to go back on Lovenox injections (higher dose than the prophylactic ones for the trip) and Coumadin!  Eeeh gads!!  That really shook me up.  I asked him if it was possible that it was a false positive, and he said we could do another test if I want.  I WANT!!  Please keep all your fingers and toes crossed for me that it was a false positive!  I need low numbers on the next test!  I DO NOT want to go back on Lovenox (belly injections) OR Coumadin.  Not to mention that the Lovenox costs about $700 for a one week supply!  Is that outrageous or what??!! 

Had the teeth pulled on Thursday -- $450 for half an hour’s work!  I could have paid another $500 and been knocked out, but I opted for the novocaine or whatever they use (local anesthesia).  It all went fine; he had to work pretty hard on one of the teeth -- a lot of yanking and pulling.  Still have a little residual soreness but nothing much.  I go back to the oral surgeon on Monday for a checkup.  The following week I start the crown work.

Once all the dental work is out of the way, I can start the Zometa infusions, which will hopefully be in mid-September. 

Okay, that gets us all caught up on the “medical stuff”…..I think…..  I’ll keep you posted on the next D-Dimer test, which will be sometime this coming week.

Now let me backtrack just a tad.  St. Augustine was absolutely wonderful.  We spent 3 months as campground hosts at Anastasia State Park.  We were responsible for 2 loops of campsites and for the bathhouse in between those 2 loops – cleaning the sites after campers left and before the next campers arrived, and cleaning the bathhouse/restroom once a day. We worked 3 days on/3 days off and received a free campsite in exchange for our services.  We had some great neighbors, – fellow volunteers.  We also reconnected with our dear friends, Brenda and Paul, and spent lots of time with them.  Paul and Ken used to sail together on tugboats before they went “deep sea” and worked on ships.  Brenda and Paul just recently moved back to Florida and live about half an hour south of St. Augustine.  They also hosted an “old salts” convention at their condo, and Judy and Bobby (Bobby also sailed with Ken and Paul on the tugboats) came over from Orlando for the festivities.  Fun weekend! 

Janice and Fred (Ken’s brother) spent a week with us in St. Augustine, which was great fun.  They stayed in the guest house (a.k.a. pop-up camper), which worked out very well, except that it was brutally hot (as Florida tends to be in the summer!) when they were down.  We had a grand ol’ time anyway! 

In mid-June, Mom asked me if I had checked the mail lately.  I hadn’t.  Because we weren’t expecting any mail in St. Augustine.  She told me she had sent something, so I needed to check it.  For the life of me, I could NOT imagine what she had sent because we do most of our communications by email and phone.  Doesn’t everybody?!  Well…….I went and got the mail.  OH MY LORD!!  She had sent me another check for $1000 from anonymous donors!  I’m telling you, this makes me so emotional.  I’m crying as I write this.  I am just so grateful for the outpouring of love and generosity, and you just have no idea how much it means to us.  I deposited the check in the “love fund” account, as Nancy so appropriately named it.  At one point in time, Ken and I had talked about taking a vacation to the Virgin Islands with the money that was left after my deductible was met.  However, we have come to our senses and have decided to be much more realistic and practical.  I’m using the money for my dental work (I have no dental insurance, and it’s going to cost $1843), with the extra going towards next year’s deductible.  And possibly some for Lovenox (if I have to have it) because I have no drug coverage either.  So, again, thank you so much to my loving and generous family and friends of the family for providing me with the means to pay these medical bills.  We appreciate it more than we can ever begin to tell you. 

Kenny, being the funny guy that he is, said to me yesterday, “Open your mouth wide.”  He looked in and said, “So THAT’S what St. John looks like!”  What a jokester.  It’s the right decision.  And I do believe we will get to the Virgin Islands (St. John in particular) one day down the road.  The timing just isn’t right at the moment.

But I DO have a very fun and exciting trip planned!  My sweet, loving, and amazingly wonderful sister has invited me on a road trip!  I'm going to help her drive her son, Jimmy’s, truck from North Carolina to California.  As most of you know, Jimmy recently became a Green Beret (way to go, Jimmy!!) and is now stationed overseas, but his truck is in NC.  SO, Nancy and I will drive it to CA with a stop in Tucson for a week, where Mom and Freeland will fly in for a rendezvous – which we’re really looking forward to!!  These rendezvous (how do you make that plural?) just don’t come often enough!  And we’re hoping to see Uncle John and Karen while in Tucson, too, which will be great fun!  We’ll drive the truck to Carlsbad, CA, spend a few days there, and then fly to Portland, OR for a fun weekend with Jeff and Wendy.  Really looking forward to that, too, because we haven’t spent time with them since the fabulous party in Maine last January!  Then I will fly from Portland to Jacksonville because Kenny will be back in St. Augustine at that point.  We’ll be doing another 6 weeks of campground hosting (from mid-October until the end of November).  Hopefully none of the road trip/flight plans will get nixed by Dr. Sprawls after the next D-Dimer test (prolonged sitting is not a good thing).  When I discussed the plans for the trip with him during our visit last Monday, it was BEFORE the positive D-Dimer test.  I’m trying not to get too worried about things until after the next test……WHICH IS GOING TO BE NEGATIVE!!! 

Unfortunately, I will have to continue to work during the trip, especially since I think I will be losing my job in the not-too-distant future.  But, Nancy, being the wonderful sister that she is, said that we can plan our heavy travel days around my work schedule; i.e., do most of our traveling when I don’t have much work and stay put when I have a lot of work.  I think it will all work out just fine, and I am so looking forward to it!!  Of course, we will take plenty of time to “stop and smell the roses” and get the legs moving/blood circulating. 

Well, once again, I have rambled on way more than I had intended.  It is now time to get outside and go for a walk.  My chiropractor and good friend, Bill, told me that I need to amp up my exercise regimen and try to avoid the prolonged sitting as much as possible.  And he’s right!  I rode my bike to the Pioneer Trail yesterday and today and walked the trail both days – roughly half an hour of biking and 35 minutes of walking.  Gotta keep it up.

Love you all so much!  Sending hugs to every corner of the country!!

Here is a picture of Dr. Sprawls that I took with my phone at Monday's appointment.  Kenny and my Mom both said I need a picture of him so when I'm 87 years old I can thank him for saving my life.  Of course, my Mom said I need a picture of him with me, but I don't like to be in pictures (did I get that from you, Mom?!)

Moving on doesn’t mean you forget about things.  It just means you have to accept what happened and continue living.  – Unknown

Ooooeeee….now it has been almost 6 weeks since I last wrote!  Where do I begin?!  Maybe I’ll be sort of chronological about things, which I guess is more or less how I usually go about my blog, but I seem to write so seldom now that I really can’t remember.  Actually, sometimes I think I talk about the “fun stuff” and then follow it with the “medical stuff” because the fun stuff is…..well, much more FUN! 

Oh well……here goes…..

I had an appointment with the radiation oncologist, Dr. Bryant, on April 3^rd.  First I met with Cathy, the nurse practitioner, who was her usually cheery self, and we had a great chat.  I also told her the story of my amazing family and friends of the family and the “love fund” (as Nancy appropriately called it)…..and Cathy cried…..and I cried…..  Then I met with Dr. Bryant.  Had a nice chat with her, too.  She said everything looks great and feels great, with no suspicious lumps.  She said when “lesions” return, they usually return along the mastectomy scar line.  Thankfully, everything was fine there.  She said I don’t need to return to see her unless something comes up and I need her.  Otherwise, I can just continue to follow up with Dr. Sprawls.

On April 6^th, we finally launched “Whitecap,” our 25’ Albin cruiser, which was the culmination of 8 months of work (repairing, remodeling, redoing, fixing, cleaning, painting, polishing, shining, etc.) by Ken and a good friend of ours.  I can’t take any credit for anything – they did it all!  We hadn’t used the boat at all since we bought it, other than the trip Ken and his brother, Fred, took when they brought the boat from Jacksonville to Merritt Island, which WAS a great trip…..but they were on a mission.  Anyway, after launching the boat for what I had hoped would be MY maiden voyage, the engine overheated in the 10 minutes from the boat ramp to the dock.  Bummer!  Mind you, they had run the boat on the trailer several times, and it was fine every time!  Back to the drawing board.  Ken and Don worked on it for several days, and finally got the problems (yes, it had other issues, too) resolved.  Yay!  They brought it up to the park we were staying in on April 12^th – they have a little marina there, so we could keep it tied up there and use it whenever we pleased.  How cool is that?!

On April 9^th, I decided on a whim to go get my hair colored!  I was so excited about getting rid of the gray!  Unfortunately, I went to a walk-in salon instead of my usual hairstylist because I wanted to get it done “right now!”  Mistake!  I took 2 pictures with me of the basic color I wanted – kind of a sandy blonde or “bronde” (brownish blonde).  After 2 hours and 20 minutes, it looked NOTHING like either picture!  IMHO (in my honest opinion), it was quite a disaster.  The sweet girl tried to say that it must be a reaction to the chemotherapy, although I pointed out to her that I hadn’t had any chemo for almost 7 months!  I was extremely disappointed….extremely upset is more like it….and was right back to wearing bandanas again.  Now I’m kind of “over it” and have convinced myself that it’s only hair.  No big deal.  I can live with it.

On April 10^th, I went down to Vero Beach to meet stepsister, Becky, and her daughter, Rachel.  Becky was only in Florida for 2 days (from CT), and it just made me so happy that she and Rachel could meet me for a couple of hours.  We met about halfway between my place and Rachel’s place and had a most delightful lunch at the Ocean Grill, overlooking the ocean.  And it was such a gorgeous day, too!

Then on the 13^th, my college roommate, Paddy, and her husband, John, came to visit.  What fun we had catching up on 36 years of news and stories!  Well, I don’t think we covered everything, so we will definitely have to do it again!  We spent most of the afternoon “hanging out” at our campsite, chatting away, and also walked down to the boat so they could see our “luxury liner” – all 25 feet of it!  Had a fun dinner at Rusty’s in the Port and got to see the Disney Magic (cruise ship) heading out to sea.  Came back to the park and had a campfire and more stories.  They stayed in our “luxurious guest quarters” (our pop-up camper), which turned out to be an adventure because the wind was HOWLING that night.  It was almost like a bloody hurricane; I mean, it was REALLY windy.  No disasters, though.  The pop-up didn’t blow away or roll over, and all was well in the morning, albeit still quite windy.  Unfortunately, Paddy and John had to head out the next morning, but it sure was great to see them and reconnect after so many years!  Let’s do it again, guys!!       

On Sunday, April 15^th, I finally got to go out on my maiden voyage on Whitecap.  It was still a bit windy but great fun, nevertheless.  We anchored up behind a spoil island, had lunch, sat in the sun, and just relaxed and enjoyed being out on the water once again. 

Oh, I finally decided, after much contemplation, to go ahead with the Zometa infusions that Dr. Sprawls wanted me to start (for osteoporosis and decreasing the chances of bone mets).  So I made an appointment for my first infusion for April 20^th.  HOWEVER, I had a dentist appointment for a routine cleaning (and to get him to sign the dental clearance to start Zometa) on April 16^th.  Well, guess what?!  He wouldn’t sign the clearance because I have 3 “problem” teeth.  He said I have 2 choices:  I can have 2 crowns and possibly 2 root canals and a filling, or I can have the 3 teeth pulled.  UGH!  What a choice, eh?!  Gotta say I’m leaning towards the extractions because we’re talking $750 versus $4500 (roughly speaking on both figures), but I’m not ready to make a commitment either way yet.  I’m planning to talk to an oral surgeon and see what he says.  At any rate, extractions are a contraindication for starting Zometa (or bisphosphonates in general) due to the possibility of ONJ (osteonecrosis of the jaw) and/or other complications.  Waaaahhhhhh!!!  Just when I had finally made up my mind to move forward with it.  I was extremely bummed out when the dentist gave me that news but, as with the hair, I’ve more or less come to grips with it.  So be it.  I just have to deal with it.

On April 17^th, we got a spectacular view of the space shuttle Discovery departing the Space Coast on its final mission – heading to the Smithsonian!  They flew right over our campground.  What a spectacular sight – very beautiful (and very sad)!

On April 20^th, I had an appointment for a Doppler flow ultrasound of the DVT (blood clot) in my leg.  After a few minor snafus, it was finally completed.  And, yes, I still have a blood clot.  I was truly hoping it had “reabsorbed” itself….or whatever they do…..but it was still there.  In fact, the ultrasound tech wasn’t even going to let me leave the office until they got in touch with Dr. Sprawls to make sure he was aware of it.  They were way more freaked out than I was.  I told them I HAD to leave because I had another appointment – for a D-Dimer blood test and a breast cancer blood panel – at Dr. Sprawls’ office.  I assured them that he and I were both well aware of the DVT.  So off we went to Space Coast Cancer Center.  Ken waited in the car while I went in for the blood draw because I knew it wouldn’t take long.  Hah!  While I was having the blood drawn, the medical assistant informed me that I had to see Dr. Sprawls.  I said, “Oh no I don’t.  I have an appointment with him next week.  I don’t have time to do that today” (knowing full well that would be another hour or 2).  She said they would squeeze me in between patients and I would be next, but he had to see me!  Well, they did just that.  And I was next.  And he had to see me because the cardiology department called him from the hospital and said my ultrasound was positive for a DVT!  Okay, okay.  We know that.  He said I don’t have to go back on the warfarin unless my D-Dimer test comes back positive.  It didn’t.  And the tumor markers were within normal limits, too.  I don’t understand why the tumor markers aren’t zero, but at least they were in the normal range.  Alas, no more warfarin.  And the coolest thing about my surprise visit with Dr. Sprawls was that he let me cancel the appointment I had for the following week!  Yahoo!  And I don’t have to see him until August!      

Kenny’s brother, Fred, arrived for a week-long visit on April 25^th.  It was really great having him around.  I wish Janice (his wife) could have come, but she was tied up babysitting grandbaby #1 in Maryland.  Fred got to go out on the boat, he and Kenny also went kayaking, and he accompanied us on our trip to St. Augustine, which is where we are now.  He got a whirlwind tour of St. Augustine – really only had one full day – saw the old fort, walked down

St. George Street

, went to the beach, and had some great meals around town.  He had to leave a couple of days ago and head back to Rhode Island.  We’re slowly getting settled into our campsite at Anastasia State Park where we’ll be campground hosts for the next 3 months.  Looking forward to it.  It’s a beautiful park, and we love St. Augustine.  Our duties include cleaning restrooms (not as bad as it sounds) and cleaning the campsites in between campers.  We work 3 days on/3 days off – great schedule.  And a really nice perk is that our campsite is in the “admin area,” which is actually a little section off to the side of the St. Augustine Amphitheater parking lot.  Well, they get some pretty good entertainment here.  Our second night here, the Beach Boys were playing!  So we sat outside, had a glass of wine, and listened to the Beach Boys live in concert!  Tonight the Fray is playing.  Never heard of them, but they sound pretty good….so far…..  Ringo Starr will be here at some point, along with other great venues. 

Well, as usual, I have rambled on and on…..and on and on.  Time to quit.  Not sure when I’ll be back here.  Just not too much to report on these days.  Feeling fabulous…..and life is good!  Hope all is well in your various corners of the world!  Sending hugs from Florida!   

Whitecap is launched!

Becky, Rachel, and me -- enjoying a fun and fabulous lunch!

Paddy and me catching up on 36 years of news and stories!

Shuttle Discovery heading to the Smithsonian

Fred and Kenny out on the boat

Ready for our move to St. Augustine

Fred and Kenny at Anastasia State Park

Kenny and me at Sangrias in St. Augustine (I'm not ready to display photos of me without a hat or bandana, although Dr. Sprawls made me remove my bandana and told me, "Your hair is beautiful.  You need to quit wearing bandanas!"  So I rarely wear them anymore; just not ready to display photos.)

Time is like a river......

Time is like a river.  You cannot touch the same water twice because the water that has passed will never pass again.  Enjoy every moment of life.  – Unknown

I can’t believe it has been almost 3 weeks since I last posted in my blog!  Time flies when you’re having fun!  And what fun we’ve been having!  Mom and Freeland were just here for 3 weeks, and Nancy was here for 9 days of that.  It was SO GREAT to have them here!  And thank you so much for the wonderful “vacation” in an oceanfront condo, Mom and Free!  It was so nice staying with you “on the beach!” 

The weather wasn’t our usual, picture-perfect, gorgeous, typical March weather when Nancy was here, unfortunately, but we managed to have a great time anyway.  After she left, the weather made a drastic turn for the better, and we had mostly beautiful days for the rest of Mom and Free’s stay.  Sadly, they actually left a week early – I guess they missed those 30-degree Maine days!  Just kidding.  I think they missed their own bed (their bed in the condo wasn’t very comfortable), their “routine” at home, their fitness class, etc. etc.  So they left on Friday and made it safely back to Maine after 3 very long days of driving.  We packed lots of fun into the 3 weeks they were here and into the 9 days Nancy was here.  Lots of long walks on the beach (at least once a day, usually twice a day, and sometimes 3 times a day!), several shop-til-you-drop days, an airboat ride, a rehabilitated sea turtle release, St. Patrick’s day fun and frivolity, a visit to the beach at Canaveral National Seashore, many delicious lunches or dinners at some of the great seafood places in town, endless (but fun) rounds of Mexican Train, daily “happy hours” on the condo balcony while enjoying the sound of the surf….and the list goes on and on…..  We also drove down to Wellington one day to visit niece Rachel who is spending the winter there in horse country.  She is working for/training with a woman who is training for the Olympics (in dressage, I believe).  Wellington runs the largest and longest running horse show in the world – from January through March – so Rachel is really loving it there.  It happened to be her day off when we visited her, so we were able to go out and enjoy a nice leisurely lunch with her.  And then we went back to “the barn,” and she got decked out in her riding clothes and gave us a private show of her expert riding skills on the horse she is mainly working with this winter.  She and the horse, Thys, were beautiful together.  Her Mom, Becky, is coming to Florida in April for just a few days to visit Rachel, and I’m really hoping I can get down there again so I can visit with Becky for a few hours.  I mentioned in my last blog that I look at life differently now.  I really do.  And family and friends are SOOO important to me and mean so much to me.  Not that they didn’t before…..they always have.  But now I really want to take the extra step or go the extra mile to spend time with my family and friends whenever possible. 

Speaking of friends, after we dropped Nancy off at the Orlando airport (which we hated to do – hated to see her leave), Mom, Freeland, and I continued on to Lakeland to have lunch with long-time family friends, Jeanne and Dick Bole.  Jeanne, a delightful person, and her family were friends of our family way back when I was a youngster.  And Dick was my 4^th grade teacher – my all-time favorite teacher…..because he had (and still has) such compassion, wit, a great sense of humor, and a love teaching that made being in his class such a joy.  It was great fun seeing them both.  They are wonderful people.

And more on friends – several of my college roommates have gotten in touch with me after receiving my “Christmas letter” and the news of my journey last year.  Oh what great fun it is to be back in touch with them – thanks, Paddy, Sue, Mara, Fran, and Jennifer – so wonderful to hear from you!!  So many great memories of our days at SLU (St. Lawrence University) so many years ago (did we really graduate 36 years ago??)  And my dear friend/college roommate, Paddy, and her husband, John (also an SLU grad) are coming to visit for a weekend in April!  How fun!  So looking forward to that! 

Since this blog is mainly about my breast cancer journey, I guess I should talk about the relevant medical issues now and then.  It’s hard to believe “all that stuff” happened last year.  I feel so great now that I don’t even like to focus on that at all.  I have definitely moved on, and that’s all part of the past.  However, there are a few issues that still linger.  The ever-so-watery eyes, for example.  It turns out the oculoplastic surgeon that Dr. Kutryb, the ophthalmologist, recommended is not in my insurance network, unfortunately.  So I have to call him and see if he can recommend somebody else.  Hopefully he can because I think I’m definitely ready to do something to resolve this problem.    

I had a followup appointment with Dr. Sprawls (medical oncologist) on 3/16.  Mom and Free accompanied me to that appointment so they could meet him (they loved him), and they thanked him for taking such good care of me last year, which I know he appreciated.  I warned them to bring books with them because he is usually (I mean always!) running behind.  We waited a little over an hour I think, but he spent close to 45 minutes with us.  He told me I could get off the warfarin (Coumadin) if I did a D-Dimer blood test and if it came back in range.  I did.  It did.  And I’m off the warfarin as of last Thursday, 3/22!  Yay!!  And no more INR checks.  Double Yay!!  We talked about my not-so-great (terrible, in fact) DEXA scan results – score of T minus 3.2 in the spine (the hip number eludes me at the moment, but it wasn’t as bad as the spine).  So that means I have osteoporosis, and of course his recommendation was drugs.  Did I expect otherwise?  I was adamantly opposed to it until he told me that “studies have shown” (the ol’ “studies have shown” phrase) that breast cancer patients who take monthly Zometa have less likelihood of bone metastases.  Well, heck!  Now what do I do?!  Of course I want to decrease my chances of bone mets!  So I have to do some research of my own and find out more about it; i.e., more about “the studies” and who conducted them and who was in them and how many people, etc. etc.  The other drawback, of course, is that Big Pharma charges an arm and a leg….or 2 arms and 2 legs…..for this monthly injection.  Space Coast Cancer Center actually bills over $5000 per injection!!  Reasonable, eh?!  NOT!!  However, my insurance company only “allows” $971 of that, which is still extremely absurd, to say the least, but that is all I would be responsible for – $971 per month for each injection!  Thanks to my loving and generous family and friends of the family, I have the money to pay for that, and it will go towards my deductible for the year.  I just need to find out more about Zometa – the risks versus benefits, how long I would have to be on it to derive benefit, etc. 

I’ll have to have another D-Dimer test on April 20^th, along with another ultrasound to check the status of the DVT (blood clot) in my leg.  Hopefully those results will be A-OK.  Keep your fingers crossed.  I’ll have a followup visit again with Dr. Sprawls on April 27^th to go over everything.  I also have a followup with my radiation oncologist on April 3^rd, but I don’t expect any problems there.  I’m doing great!  And that’s all there is to it! 

My fingernails are ALMOST back to normal, which I’m thankful for.  But my hair is far from normal.  Mom said it looks “cute” and “chic,” but those aren’t the adjectives I would use!  It’s too fuzzy, too short, and very gray!  But it’s only hair.  Who cares?!  Someday it will look sorta normal…..after a trip to the “coloring department” of the hair salon!  Dr. Sprawls wanted to see my hair, so I (reluctantly) whipped off my bandana and showed him.  I told him gray hair looks very distinguished on most people (he has gray hair)…..I just don’t want it on my head....LOL.  

Once again, I have rambled on and on……my apologies……so I will close for now and be back in a few weeks.  As always, thank you all so much for your love and support!    

Rachel and Thys -- so beautiful!

Rehabilitated sea turtle released by Sea World -- very cool!

Brevard County Police & Fire Pipes and Drums (they are all members of the police or fire departments, and they were excellent bag pipers and drummers!)

St. Patrick's Day dinner at Rusty's

Dinner at Atlantic Ocean Grille (Thank you, Stuart and Donna, for giving Freeland the gift certificate! Thank you for sharing it with us, Freeland!)

Suzy and Kenny at Atlantic Ocean Grille

Freeland, Mom (they look fabulous for 85, don't they?!), and Nancy (she looks fabulous, too!) at Atlantic Ocean Grille

Sand hill crane

Gulls on the beach

Watch out for the gators....

Fun lunch with Jeanne and Dick Bole

    

Feeling so grateful again!

Feeling gratitude and not expressing it is like wrapping a present and not giving it.  ~William Arthur Ward

Once again I find myself so filled with gratitude – gratitude that I just can’t even begin to express.  Where do I begin? 

I will get back to the wonderful arrival of Mom, Freeland, and Nancy in a minute, but I have to begin my blog by saying that 2 nights ago, the 3 of them presented me with yet another HUGE check!  Yes, you read that right.  Another huge check!  In the amount of $1000!!!  And once again I found myself totally overwhelmed and overcome with emotion (see photos below; the tears are very real, not just from the watery eye syndrome).  The subject line on the check says:  Suzy Fund from Anonymous Donors!  They refuse to divulge the donors, as the donors apparently insisted on remaining anonymous, so all I can say is “THANK YOU EVER SO MUCH” from the very bottom of my heart – in the hopes that the anonymous donors are readers of my blog.  The money is going to be deposited into our “special account” for my medical bills/deductible and the special trip we’re planning to take, most likely to St. John in the U.S. Virgin Islands.  The “special account” is also where the big beautiful Bank of America check from my family – immediate and extended – and friends of the family resides.  THANK YOU ALL SO VERY, VERY MUCH for your generosity and your continued love and support!!!  I really honestly cannot even begin to tell you how much Kenny and I appreciate it.  There are no words to express my true feelings.  I just hope you all understand how much it means to us and how much YOU all mean to us!!! 

Mom and Freeland arrived in sunny Florida last Friday (3/2) after spending 4 days on the road driving from Maine to Merritt Island.  Such a long trip, and the grand finale was that the trusty ol’ GPS had them get off I-95 one exit too soon, so they were heading west towards Orlando instead of east towards Merritt Island and Cocoa Beach.  Of course, the next exit was 10 miles west – the first opportunity to get off SR528 West and get back on SR528 East.  After that minor mix-up, they arrived at our RV around 1530 on Friday, and we were so happy to see them.  We had some very luxurious accommodations (not!) for them in our pop-up camper, although we had actually planned on staying in the pop-up ourselves and giving them our bed in the RV, but they wouldn’t hear of it.  We had a nice evening at the campground, and enjoyed a campfire together under a beautiful starlit night.  They said they slept well in the pop-up.  Would they tell me otherwise??!  On Saturday, we checked into the condo that Mom and Free have rented for a month right on the beach in Cape Canaveral – very nice place with a balcony overlooking the beach and ocean.  We picked Nancy up at the airport on Saturday afternoon -- so happy to see her, too -- and she will be here until Monday (3/12) – can’t you stay longer, Nance??!!  Please??!!  I know she would love to, but she has other commitments.  The four of us have been enjoying our time together (Kenny is staying at the RV with the doggies, although he joins us for occasional dinners and outings) – shopping, walking/running on the beach, happy hours in Port Canaveral, games of Mexican Train in the evening, relaxing, etc.  We even had one day nice enough to sit on the beach for several hours and enjoy our lunch there.  The last couple of days have been extremely windy and not really “beach days” but still enjoyable.  I really look at life differently now and try not to complain about trivial things, such as the weather.  Every day is beautiful in its own way, whether it be sunny, windy, rainy, chilly, warm, whatever.  Of course, I favor the beautiful, sunny, blue sky, 80-degree days, but I have no complaints about the other days that are thrown our way.

I had my INR checked on Monday, and it was 2.4, which is perfect.  What wasn’t so perfect was that I had to wait for 40 minutes in the waiting room for my 2-minute appointment (or was it a 1-minute appointment?).  I had put in a request the week before to change my INR appointments to every 2 weeks instead of every week, but “she” said she hadn’t heard back from Dr. Sprawls about that request yet, so I would have to continue every week.  I politely explained that since my INR has been in the normal range for the last 8 weeks, I would have it checked again on March 16^th, the day I’m scheduled to see Dr. Sprawls.  That way I can have it done just before my appointment since I’ll be there anyway.  And then hopefully he will let me go every 2 weeks, or maybe every 3 or 4……or better yet, get OFF the Coumadin!  I would LOVE that!!

I went back to see Dr. Kutryb, the ophthalmologist, last Friday.  He was sorry to hear the “reamings” didn’t help my eyes at all.  He said he could do a 3-snip simple surgical procedure to open up the top of the tear ducts, but he said it would probably be best to go see an oculoplastic surgeon in Orlando to see if the ducts are collapsed throughout the system or just at the top.  He recommended somebody in particular, so that is probably what I will do.

And now it is time to call it a day!  Hugs to everybody!  And thank you all so much again for your love and support and generosity!       

      

They just presented me with the $1000 check!

Tears of amazement and gratitude!

Sunday lunch at Rusty's

Mom and Freeland on the condo balcony

View from our balcony (Disney ship leaving port)

Happy Hour at Fishlips

Yesterday was my cancerversary

Manifesto from holstee.com.  Thought it was worth sharing.....

Yesterday was my one-year “cancerversary.”  It was one year since my bilateral mastectomy, and Dr. Sprawls told me that would be my cancerversary date – the day the cancer left my body.  So now I can say that I’m one year out!  And I’m happy to report that yesterday slid on by without me even thinking about it; it didn’t even dawn on me until this morning that my cancerversary date came and went with no horrible feelings, no “funk, no depression.  It was totally uneventful.  And I can’t wait for the day when I can say “I’m 10 years out,” and “I’m 20 years out!”  Woo hoo!  THAT is something to look forward to! 

Kenny and I celebrated our birthdays last week, and had a wonderful time.  My birthday (the 18^th) was very relaxing.  We went to some yard sales in the morning, Kenny worked on the boat for a little while, I did some “retail therapy,” and we came back to the RV to enjoy a dinner of snow crab claws at our picnic table overlooking the Banana River.  Very delightful.  On Sunday, we went up to Savannah for a few days – to celebrate Kenny’s birthday with some very dear friends of ours, Sue and Donn, from our Key Largo days.  They are now certified personal trainers in Sag Harbor (NY) but were in Virginia for a conference.  After the conference, they were going to drive to Merritt Island to visit us – a 900-mile drive!  And then drive home to Long Island – a 1200 mile drive!  And they would only have one day here with us.  Now THOSE are some dear friends!  Anybody willing to drive 2100 miles to spend a day with us……well, that’s just amazing…..and makes us feel so loved.  Anyway, we offered to ease their “pain” a little bit by meeting them in Savannah, thereby knocking 600 miles off their 2100 miles.  They were very thankful, and we had a wonderful visit together and a splendid time in Savannah – a very fun place to spend a few day.  AND, we were able to spend TWO days together (and 3 nights) since they didn’t have to drive as far.  We drove out to Isle of Hope and Tybee Island one day, walked around the streets and shops of Tybee Island, and had lunch at the Crab Shack (a bit of a tourist trap but fun).  Then we walked down to

River Street

(the historic district), which was a nice walk from our hotel.  Took the free boat ride across the Savannah River over to the Westin where we had a glass of wine and enjoyed the view of

River Street

from across the river.  Took the boat back across and walked around the streets and shops a bit.  Had dinner at an Irish pub that Kenny and I had been to many times before, when we were in the Merchant Marine and stopped in Savannah on various ships.  We vowed to return to the Irish pub the next night – for Kenny’s birthday – to listen to the live music…..but never quite made it.  On Kenny’s birthday (the 21^st), we started out the day with the complimentary breakfast at the hotel.  And then we had over an hour of (complimentary!) personal training time with Donn.  He showed us all kinds of great exercises and gave us rubber tubing and stretchy bands of varying resistances so we can continue with the exercises at home, which we both need and are very much looking forward to.  Very cool!  Then we took one of the trolley rides around town, learning all kinds of history and enjoying the ride.  Although we had done it before, you learn new stuff every time…..or is it that you forget what you learned last time, so it’s ALL new??!  Nevertheless, it was great fun.  And then Sue and Donn treated us to a delicious (and very memorable) birthday dinner at a really nice restaurant called Boar’s Head Grill on

River Street

.  Sure did hate to see our 2 days with them come to an end the next morning; hated to say goodbye.  We really had a good time.

Our doggies had a great time, too.  We left them with our good friends, Debbie and Bill, and their St. Bernard, Maisey.  They always have a good time at their house.  And they even had a bonus this time – Debbie’s Mom is visiting from New Jersey, and the dogs loved her…..cuddled up with her on the couch and slept in her bed every night!  Sure is nice to be able to go away and know they’re in good hands. 

Getting back to reality on Thursday was a bit of a drag.  Actually, that’s quite an understatement.  It was a REAL drag!  I had 12 hours of typing (transcription) to do on Thursday.  On Friday, Saturday, and today I was buried up to my eyeballs in paperwork; a.k.a, taxes.  I had to calculate the mileage for the 121 medical appointments I had in 2011 – wow! What a job!  I had to remember which park/campground we were living in at the time of each appointment and then figure out the mileage.  3832 miles for the 121 appointments!!  Eeeeh gads!  Ya know?  I think I MIGHT have had 10 medical appointments in the 20 years prior to 2011 (as in, the total 20 years), so it’s really hard for me to fathom I had 121 in one year!  And actually, it’s even more than that because there were days when I would have 2 or 3 appointments at the same place on the same day; i.e., blood work, chemo, followup with doctor, etc.  Mind boggling.  So now that I’ve gotten THAT part of the taxes done, I’m moving on to entering a year’s worth of receipts into Quicken.  Yup, you read that right – a YEAR’s worth.  I did nothing last year…..well, except work and traipse around the county to 121 medical appointments and KICK CANCER IN THE BUTT!!  Now I have the monumental task of trying to sort through this bloody, sky-high pile of receipts.  Okay, I’ll stop complaining about that.  It’ll miraculously get done somehow……  Hopefully before next weekend when Mom and Free and Nancy arrive in Florida!!  I’m SOOOO excited about that!  Mom and Free are renting a condo on the beach for a month – something they’ve never done before – so it’s going to be a lot of fun!  Sister Nancy is coming for 9 days – sure do wish she could stay the whole month, but she has other commitments.  And I’ll be spending as much time as I can at the condo.  Fun times ahead!! 

Let me touch on the only 2 pertinent “medical” issues at the moment.  I’m sad to report that the “eye reaming” only helped for a couple of days.  Now I’m back to tears constantly dripping off my cheeks and annoying the heck out of me.  I go back to the ophthalmologist on Friday, so we’ll see what he says.  I suspect he won’t be too anxious (nor will I) to do any more reaming since it didn’t really help much at all.  Don’t know if he’ll recommend surgery or not.  I’ll keep you posted on that.

The other “issue” is my INR, which I’m happy to report has still been staying WNL (within normal limits).  They kindly let me skip a week last week when we were in Savannah.  I asked them if it would be okay to skip it for a week because it’s a hassle getting it done out of town, and they obliged.  So tomorrow I’ll return to Space Coast Cancer Center for the INR check – keeping my fingers crossed for happy numbers.

I guess I’ve done enough rambling for now.  I’m no longer finishing my blog posts with “You know you’re a cancer patient when…..” because I am NO LONGER a cancer patient!!  YAY!!!  I am DONE with cancer!!!  Double YAY!!!   Oh sure, I still have plenty of follow up visits to go to, etc., but it will all be a piece of cake compared to last year – with the biopsy, the diagnosis, the surgery, the chemo, and the radiation.  That is all part of the past now – it’s history – and I’m moving on.  Life is good and I’m feeling wonderful!  So happy to be alive!  Loving life!  And I love you all!!!!!  Sending millions of hugs to everybody!

My birthday dinner

Campground wildlife -- poor guy looks a little beat up

Dinner in Savannah

Boat ride in Savannah

Sue, Kenny, and Donn at City Market

Kenny, Sue, and Donn with a bronze guy