The reality of it all......

Learn from yesterday, live for today, and hope for tomorrow.  – Unknown

 Well, I can’t believe another 4+ months have elapsed since I last wrote in my blog.  I guess I just haven’t felt “inspired.”  I would like to believe that old adage “no news is good news,” but I’m really not sure if that’s true in this case.  Oh, I suppose it is to a certain extent.  Every day I’m alive is good news, and I’m thankful for that.  But I have to admit that some days I just feel so crappy I feel like crawling into a hole.  Today is one of those days.  So why am I writing in my blog when I feel so crappy?!  I dunno.  I can’t answer that question.  I guess I just feel like writing about “reality,” and the reality is that I have good days and bad days.  Some days (a lot of days) I feel so good that I really can’t even believe I have stage IV cancer – like, certainly that diagnosis must be wrong!  Other days (like today) are quite the opposite.  Don’t worry, though, I’m sure I’ll get feeling better as the day goes on.

Last time I wrote (back in March), I had just started radiation, started Zometa infusions again, and I was waiting to hear from the pharmaceutical companies about patient assistance with the wickedly expensive drugs Dr. Sprawls wanted me to start.  I finished the radiation but unfortunately didn’t see much benefit from it.  I’m doing the Zometa infusions monthly – they’re painless really, and hopefully they are doing some good – what IS a pain is that they have SUCH a hard time finding a vein for the IV.  It usually takes 3-4 tries, they usually end up in the back of the hand, and then I can’t move my (right) hand/arm for the entire infusion (roughly 2 hours) for fear the needle will pop out of the vein.  It’s minor, really.  I guess I’m just in a “whiny, complainy” mood today.  As for the drugs – good news there – I was approved for patient assistance/compassionate need from both pharma companies and am getting both drugs free for a year! 

Some more good/bad news – last time I had my blood drawn (at the end of June), one of my tumor markers had gone down (yay!), but the other one had gone up…..again (boo!).  I have another blood draw at the end of this month, and of course I’m HOPING for good news – I HOPE they both went down!  I have an appointment with Dr. Sprawls on 8/29.

And yet some more good news – we traded our Subaru (manual transmission) in on a Ford Focus (automatic transmission), and I think getting rid of all that shifting has helped my hip quite a bit.  This past week we also moved to a different campground – one with a swimming pool – and I’ve been doing self-imposed pool therapy/exercises daily, which seems to be helping significantly.  After only 3 days, I’m walking much better – still limping, still have pain, and still can’t do long distances – but there is definite improvement. 

Okay folks, I guess I’m done rambling for today.  Sorry I’m not in a very cheery mood today, but I’m very optimistic it will get better.  Have no fear, most of the time I’m still upbeat, positive, hopeful, and optimistic.  

One day at a time……live life to the fullest…….and enjoy every moment!  

 

 

Just taking things one day at a time.......

I do believe it’s time for a little update on things here.  Not feeling overly “wordy” at the moment, so it will be relatively brief.  We (Kenny and I) are still trying to come to grips with the new diagnosis/label that I’ve been branded with – stage IV metastatic breast cancer (with mets to the bone).  We’re “hanging in there” and just taking things one day at a time – trying to remain optimistic, hopeful, and positive (and we’re successful MOST of the time).

I’m sad to report that I didn’t get accepted into the University of Florida radiation program.  One of the doctors from Jacksonville called me on 3/20 and broke the news to me.  He said the damage in my left hip was too extensive for the type of therapy they offer.  From what I understand, the proton therapy they offer is very pinpointed and to a very limited (as opposed to broad) area.  Well, he might as well have taken a big ol’ sledgehammer and punched me in the stomach.  He REALLY knocked the wind out of our sails, big time.  He did say that he thought I should still have radiation to the area, just not the type they offer.  I told him I had an appointment the next day with my local radiation oncologist.

On 3/21, we met with Cathy (ARNP) and Dr. Bryant (radiation oncologist) at Space Coast Cancer Center – it was kind of a “here we go again” moment, but both Kenny and I felt better after talking to them.  The motto at SCCC is “The road to healthy healing starts with hope,” and we did feel much more hopeful after that appointment than we did after talking to Dr. Bryant (can you believe they have the same name?) at UF/Jacksonville.

Okay, long story short.  I started radiation today (3/31) and will have a total of 10 sessions.  It will be Mon-Fri for 2 weeks (maybe 3).  They said I should notice a decrease in the pain after 5 sessions.  And there should be no side effects to speak of.  I had outrageous burns after the breast/chest radiation, but there will be none of that this time because they “shoot” right down to the bone. 

I also started the Zometa infusions again on 3/21 and will have that every 4 weeks to start with. 

And I’m waiting to hear from a specialty pharmacy about the new “more aggressive” hormone therapy.  Not only is it more aggressive, it is totally unaffordable (one of the pills is $9700/month – is that outrageous or what??!! – and I don’t know ANYBODY who can afford to pay that kind of money).  Supposedly the specialty pharmacy provides patient assistance/financial help.  We’ll see what they say.

I’m also sad to report that I had my blood work drawn last week, and my tumor markers continue to rise.  Ugh.  Dr. Bryant told me today that after the radiation, we will hopefully see those go down.  Sure do hope so. 

Well, I’m sorry this isn’t one of those bright and cheery updates, but I just wanted to let you all know what’s going on in our neck of the woods.  I’m going to put a few pictures in here to brighten things up a bit.  We had a very nice visit with Becky and George a few weeks ago.  And Kenny and I have spent the past 2 Sunday afternoons enjoying some Florida sunshine.  And we’re really looking forward to a visit with Donn and Sue from Long Island tomorrow for a couple of days. 

Ken, Suzy, George, and Becky at Rusty’s in Port Canaveral (3/11/14)

Ken, Becky, and George on Cocoa Beach Pier (3/12/14)

Kenny and me enjoying a margarita at Crackerjacks in Titusville (3/23/14)

At Loughman Lodge in Mims (3/30/14)

 

You can’t read my “dog tag” necklace in this picture; heck, I know, you can barely see it.  My dear friend, Sandy, gave it to me, and this is what it says:

“What cancer cannot do…..

It cannot…..

Invade the soul

Suppress memories

Kill friendship

Destroy peace

Conquer the spirit

Shatter hope

Cripple love

Corrode faith

Steal eternal life

Silence courage”

Thank you, Sandy, I love it!  And I wear it with pride!  It brings me courage and hope.

 

Live life to the fullest because you never know what's around the next corner!

Our lives are not determined by what happens to us but by how we react to what happens, not by what life brings to us but by the attitude we bring to life.  A positive attitude causes a chain reaction of positive thoughts, events, and outcomes.  It’s a catalyst, a spark that creates extraordinary results. – unknown 

I can’t believe it has been over a year and a half since I last wrote in my blog.  Wow!  Okay, well, you all know that means there has been no news to report on the “breast cancer front,” which is a good thing. 

So why am I back now?  Well, I had a PET scan on March 7^th and got some bad news this week.  I’m not going to beat around the bush.  I have bone cancer.  Actually it’s bone “mets,” which means it’s primary breast cancer with metastasis to the bone, primarily in the left hip area, which is why I have been walking with a terrible limp lately – it’s painful to put pressure on that area.  Fortunately, there is NO pain when there is no weight-bearing pressure; i.e., when I’m sitting (I have turned into a sedentary blob) or even when I’m standing.  Walking is really the only painful thing, and I’m thankful for that.  I sure miss going for walks, though!   

Kenny and I saw Dr. Sprawls (my oncologist) yesterday morning, and I felt a little better after seeing him.  He spent over an hour with us(!).  I apologized for taking up so much of his time, but he said it was no problem because “you’re my MIP – most important patient -- today!”  Kenny felt worse after the visit.  I think the difference is that I was totally expecting to walk in there and hear total doom and gloom, there’s no hope, all we can do is palliative care, etc.  Kenny was expecting totally encouraging news I think.  And I guess Dr. Sprawls was actually somewhere in between the two.  He wants to do radiation to the hip, get me back on Zometa infusions (to stave off further bone mets and decrease osteoporosis progression), and change my hormone therapy to something more aggressive.  SO, I have an appointment next Friday to meet with the radiation oncologist and get a Zometa infusion.  Dr. Sprawls gave me a big hug at the end of our visit and said, “I’m sorry, Suzy.”  I told him that some days his job really sucks because I’m sure it’s not fun telling somebody they have bone mets.

Nancy (my sweet sister) and I have also been doing some research on a revolutionary program at the University of Florida (thank you for all your help with this, Nance!).  I sent them a copy of my PET scan on Thursday along with some other info to see if I qualify.  I’m not sure what the difference is between the UF radiation and the radiation here, but I will investigate that further.  Supposedly Space Coast Cancer Center (where I go) has top-of-the-line, state-of-the-art, multi-million dollar radiation equipment, so I’m just not sure what the difference is.  I’m hoping I can have a consult with UF, too.

Of course, time is of the essence here, and the sooner we get going, the better.

We also stopped at the DMV on the way home yesterday and got a handicapped tag (Dr. Sprawls gave me the paperwork to get that).  He also wrote an Rx for crutches (a friend is loaning me some instead – thank you, Traci!), pain meds, and sleeping pills!  So I should be good to go!

It was so wonderful having Becky (another sweet sister) and George here this week.  Although I hated dropping my bad news on them, it was such a fun and happy diversion to have them around.  We had a great time together! 

Oh, as if the cancer wasn’t enough bad news, the office manager from the gastro office I transcribe for called me last Friday (just after I got out of the PET scan) to tell me they officially signed a contract for a new computer system, and I will definitely be losing my job.  I knew it was probably coming eventually but had no idea when.  Still don’t know when, but it won’t happen overnight.  It will take a little while to make the switch.  I’m very thankful I’ve been able to hang onto it this long.       

With all that being said, I want you all to know that Kenny and I are doing okay.  Yes, the cancer news is devastating.  But we will FIGHT IT and WE WILL WIN!!!  And we sure do appreciate all your love and support and prayers and positive thoughts!!!!  LOVE YOU ALL SO VERY MUCH!!!  
P.S.  I haven't figured out how to change my profile picture yet, so please disregard the very old photo.

LIVE LIFE TO THE FULLEST, AND TRY TO ENJOY EVERY MOMENT OF EVERY DAY!!

 

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?!)