Thursday, February 28, 2013

Unwelcome Posters

I have deleted some Anonymous comments because they seem to be spammers.  In the future, please put your first name or your initials at the end of your comments if you are not using your Google account or something I will recognize.  I'm going to delete comments from posters who don't seem to be authentic.

It's unfortunate that this occurs, but it's a big world out there and there are those who think it's ok to spam.

Thanks for your help!

Saturday, February 23, 2013

Our trip to Kauai

Sunset from our cottage on Nawiliwili Bay

We spent 11 days at a small cottage overlooking this bay.  The next morning the Sapphire Princess arrived in port.  It remained until mid-afternoon on Thursday.  It's really quite a sight watching it come in and out of port requiring some expert maneuvering.  You can see the tugboat guiding it.

View of Kilauea Lighthouse, which was cordoned off for restoration.  There will be a centennial celebration in May.

The area is also a bird sanctuary but unlike when we were last there in May 2010, there were few nesting birds.  It is winter and perhaps too early and maybe too chilly for nesting.

Overlooking the marine wildlife sanctuary and Bali Hai in the background

North shore view


    Note that while everything was green, flowers were scarce.  We figured out that the plumeria trees drop all their leaves at some point during the winter, then bud out from the top of the branches.  The bare trees look "dead".

    Plumeria tree - pretty bare

    Starting to bud out

    And this is what they will look like in a few weeks - this picture is from May 2010.

    The same is true of bouganvillia and most of the other flowering shrubs.  They were all just starting to show color.

    My advice - if you want to see and smell flowers, don't go to Kauai in early February!

    Time is getting away from me, and Rick and I are going to the movies so I can say I've seen at least one of the Oscar-nominated films.  So I will leave you with a link to all the pictures, including the ones from 2010.  We didn't take as many on this trip but between the two, you should get your fill!

    Kauai February 2013

    Kauai 2010

    Friday, February 22, 2013

    Ah, back to reality...

    We had a great time in Kauai and I promise pictures and the story real soon.  First, a little update on me and how I am doing. 

    I had a lot of nausea while on carboplatin and my reward for putting up with it was nothing good.  The tumor markers, as I mentioned earlier, are up over 1000 and the CAT scan from yesterday shows lots of progression, including into the liver.  I was sure hoping it never got to that point but this cancer is so damned aggressive and nothing, so far, seems to slow it down. 

    So I am now on Gemzar (gemcitibine) - two weeks on, one week off.  I had my first treatment on Wednesday and I seem to be doing ok.  No nausea so far and I've been able to eat full meals.  After a couple cycles, we'll be checking the tumor markers to see if there is any sign of regression.  This chemo is known to be tough on blood counts, and I am already anemic so I'm sure I'll be watched closely.  My oncologist doesn't like to do transfusions, and I think I agree with her. 

    In the meantime I have located a lab that will take my tissue from a fresh biopsy and perform 96 test assays to uncover a chemo that looks promising.   If the website is correct, the cost is $510, probably  not covered by insurance, but worth every penny if it comes up with the "killer chemo" that I so desperately need.

    Speaking of insurance, why is it so hard for everyone to figure out that my Blue Cross Blue Shield is primary and Medicare is secondary.  The rules are clear - if your employer (or in my case my hubby's employer) has more than 50 employees, then the employer's insurance is primary.  I think this is going to be an ongoing battle and I am ready to ask BCBS for a nurse case manager to help us with this stuff.

    Wednesday, February 6, 2013

    Must there always be a spoiler???

    Ready to go tomorrow morning at 3:45 am for our 6 a.m. flight to Cincinnati, then on to LAX and finally to Kauai.  I'm almost all packed - just a few toiletries and electronics to organize, the meds are all set and head coverings are clean and ready.

    So what's the hitch, you ask?  Tumor markers...that nasty CA27.29...has risen dramatically in the past few weeks, now topping 1000.  Carboplatin appears to be a bust, the generic Actos has not made it work better, and so we will be creating a new plan for when we get back from Kauai.

    The current thought is weekly Abraxane and Gemzar, same as the carbo - 3 weeks on, 1 week off.  I will have a CAT scan either the 21st or 22nd to set another baseline.  Dr. Walsh will discuss this with Dr. Chen.  I think this protocol will mean what little hair I do have is soon gone, along with eyelashes and eyebrows...boohoo. 

    I am going to lobby for some chemo sensitivity testing on my tissue samples.  Surely there is a chemo that my tumor cells will detest, I'd like to discover which one sooner rather than later.   I feel like we are throwing darts, hoping something sticks.  There are still lots of chemos that could be the right one. 

    In the meantime, we are going to have a fabulous trip and forget about this nastiness as much as possible.   Soon to be entering the "no cancer" zone!

    Aloha, friends!!!