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!!