Update on Ben

I can’t believe it has been six months – SIX MONTHS since my last post (almost to the day). And, to avoid the 25 lashes with a wet noodle from Lainy I figured it’s time for an update.

I won’t go through all the details of my partner Ben’s history with CC (diagnosed over 3.5 years ago) as I have them in my last post for reference and my own chronological history.

Where I left off oh so long ago in October was that Ben had just left MD Anderson with a new metal stent (inserted into his old metal stent) to open up his bile duct. He was facing starting chemo once again (only Gemcitibine this time vs. the Gem/Cisplatin combo), and he was NOT looking forward to it (who would) and had considered not restarting.

After much encouragement (aka pleading, beating and begging) by yours truly he did restart chemo at the end of October. (obviously chemo is a personal decision – but my rationale is that he has always responded so well, so now was not the time to give up).

I’m happy to report that after Ben’s most recent check-ups at MD Anderson both in January (where they were amazed his cancer had shrunk back again – and where they stated he is in their top 1-2% of patients with success with CC) and again in mid-April where everything was still “holding steady” that Ben has been allowed to go off his chemo regimin once again. We don’t know how long but typically it’s 3-6 months depending on how things go.

It continues to be an amazing journey for Ben. None of us thought he would be here at this point – and if he was we certainly weren’t expecting him in the condition he is (you still would not know he is sick by looking at him). While chemo and the fatigue it brings – along with the mental games terminal cancer can play with your mind can be sometimes debilitating – Ben seems to rise above it all, round after round after round.

We recently moved back into our completely remodeled house in January (having moved out last May, moving again in December since we lost our temporary lease since remodel took longer than expected and our final move in January). So moving 3 times in 8 months all while Ben was on chemo!!! (Lainy, that’s kind of my excuse for not posting – besides the usual craziness at work). But, my point is – as Ben would say “you can’t put everything on hold because of this because than you just sit around waiting to die”. And now we have a beautiful home that makes us feel good – and right now he’s off his chemo so it’s all just in time.

So, the journey continues – uphill, downhill, sideways and so forth……but at the end of the day, I guess that’s life anyway with our without cancer.

Until next time – all my best (and I hope I don’t break a new personal record for time between my posts here.

All my best – and anyone can contact me at anytime for anything….

Tom

After another “dry spell”, here I am back with another post on the CC board. Unfortunately, Ben’s good ride had had been enjoying now has a few bumps in it.

Just a reminder – after battling Stage IV CC for three years, Ben was diagnosed with Lymphoma in January. His chemo regimen switched to a different protocol to clear that up first as it was quite agressive (but at least curable).

At the end of June – chemo was done and PET scans showed no signs of Lymphoma – and they couldn’t really see the CC (although PET scans don’t show CC as well as CT scans).

Ben was “chemo free” for the summer which was a nice break and allowed us to focus on a few other things for a change (a little travel and the remodel of our house).

On October 7th we returned to MD Anderson in Houston for a quarterly checkup. Their PET scan revealed that the Lymphoma is still gone (they consider that in remission), but it did show some lesions in the liver again – which they assumed is CC. They did a biopsy of the liver just to make sure it was CC vs. Lymphoma – and the test came back positive.

A couple weeks before heading to MD – Ben was complaining of digestion problems and a bit of stomach pain (so we were a little suspicious, but hoping it was nothing).

It turns out the new lesions were once again blocking his bile duct and he started to turn Jaundice (it’s amazing how quickly that can come on – really started while at MD Anderson and got worse over the next few days). Luckily the doctors at MD were able to put another metal stent into the biliary tract to open up the bile duct again.

While we were certainly discouraged about the news – the doctors were still positive. They said they would have been surprised not to see any growth because Ben had been off Gemcitibine since last December – so it had been almost 10 months for the CC chemo (since the treatment for Lymphoma doesn’t work on CC). The GI Oncologist at MD (Dr. Shroff) said she wasn’t nervous about what she saw….and since Ben has always responded to chemo well – she was hoping it would be the same.

We have since returned from MD – Ben has a plastic stent in his Pancreas that has to come out next week (this was temporary to prevent pancreatitis from the procedure to put in the metal stent). Chemo will start again on November 1st. The doctors have recommended that he only take the GEM (vs the GEM/Cisplatin combo) as it’s easier to tolerate then the combination and they consider GEM as the “workhorse of the two.

Ben’s spirits certainly don’t seem to be the same – and while his jaundice is gone, he does still have some stomach pain – and he just hasn’t felt that great since returning (I’m sure the combination of both the physical and mental toll of it all).

So, not the best situation – but certainly could be worse given the circumstances. We are both pragmatic enough that we didn’t think CC would be gone permanently through Chemotherapy (as I’ve never read a case where that has happened), but we were hoping it would stay away a little longer to at least get through a holiday season without chemo.

I’m a little worried this time – how long can the body take chemo? But – luckily Ben is a strong man and hoping he endures it as well this time as he always has.

All my best to all of you.

tom