Monday, March 31, 2014

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.

 

4 comments:

Rebecca said...

So glad to hear that you and Kenny are staying positive. Also SO VERY GLAD that the pain will likely diminish very soon. I LOVE THE SENTIMENTS ON YOUR DOG TAG!!! That is truly beautiful, and oh so true. We love you, Suzy, and Kenny too. --Becky

Donna & Bill Smith said...

I'm glad you will not have the burns again and less pain is always good. I too love the Dog Tag. How Beautiful! It fits you so well. You are on our minds and in our prayers. We love you both very much. Let us know if we can do anything.

Jean said...

Dear Suzy,
You have love and healing thoughts pouring in to you from all over the country, all the time - especially from the two of us here in Maine. We love you and Kenny very much!!!!!
Mom and Free

Jeff Coffin said...

Hi, Suzy. I love your dog tag message, too - positive vibes! I hope your first week radiating went well. We are sending you extra "energy" from Oregon to add to it and drive the cancer into submission and remission! We love you!
Jeff (and Wendy)