Update on Ben

So – here I am again…back so soon!

Unfortunately, not even two hours after my update on here last night Ben came down with another very high fever (102.9) – so off we went to the emergency room again. As of this writing they still haven’t found anything – his liver panel is higher (bilirubin 2.9) but CT scan, blood work, etc. aren’t finding anything conclusive.

So, now this is the 3rd time since the end of May that Ben has experienced a high fever, not quite sure what to think of all of it…luckily they can get the fever down pretty quickly and antibiotics seem to work (along with that new stent in May), guess we will wait and see.

tom

Hello everyone!

So….Ben and I made it through our vacation in Alaska. It was a great trip!! Only one minor “scare” where half way through our cruise he got a high fever (102 degrees) – this had happened in May over Memorial weekend where he ended up in the hospital for a couple new stents…so I was pretty worried. We met with the ships doctor and he seemed to think it might be a urinary tract infection based on blood work. Luckily, I had asked our local GI doctor for a prescription to an antibiotic before we left – Levaquin…which worked well in May. So – with the help of Tylenol and Levaquin we decided to stay – we kinda figured the worst that could happen is a helicopter “rescue” in the middle of Glacier Bay – and what a story that would be!! Anyway – the rest of the trip was uneventful and truly extraordinary so it was a great break for both of us.

Ben did just have his quarterly checkup at MD Anderson two weeks ago (July 22nd). We really weren’t expecting good news, as we already knew the cancer was “on the move” from the slight growth and new stents in May. And, as expected – things were growing…..not a huge amount but it was definitely bigger than it was in April but not as much as a year ago in October. Honestly, I think both of us were somewhat relieved that it wasn’t worse.

MD Anderson recommended Ben go back on the CC recommended protocol (Gem/Cis combo) – he really hadn’t been on that for almost two years (he was busy curing himself of that pesky Lymphoma last year), and has mostly been on just Gemzar as its not quite as invasive.

While the news wasn’t “great” – our doctor (Rachna Shroff – amazing), reiterated that she normally doesn’t get to talk to patients at the four year mark – so Ben is still doing quite well (and you would never know he was sick by looking at him).

So, Ben started the big GEM/CIS combo on Thursday (7/31) – it has hit him pretty hard…he’s been sleeping almost the whole time since thursday – he does get up to eat once in a while, and have something to drink but it’s definitely been tough. Luckily, he still doesn’t show any of the nastier side effects.

That’s the news for now – you are all always in my thoughts….should be an interesting summer!

Take care,

tom

Lainy, the GI doctor said the biliary tract was slightly blocked again so he put another stent in. After that and the levequain and a few days rest Ben was back to normal. His oncologist wanted to put him back on Chemo to not take any chances – he tolerates Gemzar pretty well so he went with a reduced dose.

Marion – I filled out the Biliary emergency card – thanks for the input. It was easy….I also plan to put Ben’s information in the registry. Its truly hard to believe he has been on this journey for four years – and also battled and beat Lymphoma during the journey!

And now this weekend is our 19th anniversary and we are packing for our Alaskan trip tomorrow – a cruise and train ride up to Denali National Park. While i’m a little nervous if something goes wrong – we are both in good spirits and Ben seems pretty “normal” at this point so it should be a good trip – besides we’ve weathered every other storm so i’m sure we can tackle whatever else comes our way.

I will send pics if I figure out how to post them out here!

All my best to you – never give up hope!

tom

And the journey continues. My last post in April had Ben just finishing his latest round of chemotherapy with a break approved by MD Anderson and our local oncologist here in Fort Lauderdale.

Ben has been doing pretty well – the break from chemo was welcomed – unfortunately Memorial weekend he developed a high fever (102.5) so we took him to the ER – where they were able to control the fever while they did additional testing.

CT scan revealed some very partial blockage of the biliary canal – and our local GI doctor was able to put yet another stent in the prior stents that were done in January (and over three years previously). I do wonder though if it was really an additional blockage or from an infection that can occur sometimes with all of these stents.

As a precaution our doctor put Ben back on Chemo (gemzar only once again) since he responds quite well to that treatment. It was somewhat of a disappointment as we have a 2 week cruise/train vacation planned in Alaaska starting this Sunday (june 29th – also coincidentally our 19th anniversary). Our oncologist is sending us with his blessings as he just wanted to make sure we didn’t take too much risk – but it was still a bit tough mentally for Ben (and both of us) since he had just finished in April and we were hoping to have a few months without a break. We also wondered was it really the cancer – or just an infection; but his bilirubin had climbed a bit and so probably a safe bet to put him on chemo.

Anyway – that’s my update for now. Ben is sleeping a lot this week to help him get rested for our vacation in a few days – and I’m crossing all my fingers and toes that our long awaited vacation goes off without a hitch.

tom

(p.s. – I love the look and feel of the new website).