Interested in your thoughts

Hi all!  Some of you may remember me - I have posted about my husband Robert before, but it's been a while.  I am looking for feedback on a couple of developments but be nice please  (Yes you John  )

So here goes:

Robert finished his second round of chemo and his first of radiation way back in December.  In January his CEA was down but still at 15.  (Reading some of these other posts make that seem very high! )  Since then there have been many tests, consults, etc.  We were able to go to Sloan but they declined to do surgury - Varicies from Hep C and liver disease made it too risky.- As per Sloans suggestion Robert started Hep C treatment.  They had suggested that if they fixed the HepC that in time the Varices would shrink and we could revisit surgury.  Of course he couldnt do chemo and that, so its been a long time now since treatment.  Had they told us then (March?) that his CEA was already rising, we may have switched the order, but we are far past that now.  It was 18 I think in March or April. (Sorry we are in the hospital so I don't have all my notes with me)

A few months ago the liver dr suggested a diversionary colostomy because his rectal pain was unbearable.  The surgeon declined (this is all at the VA) saying that she didn't think that it would resolve the pain and thus was still too high risk.  The pain was probably damage from radiation so the colostomy wouldnt really make enough of a difference. 

Fast forward.  He finishes the Hep C treatment.  His pain is still grossly unmanaged.  We try for a family trip before he starts chemo but he can't stand the pain.  Hospice is brought in mostly for pain management.  The VA is still discussing palliative chemo.  A few other delays, and finally last week he gets an appt with the onc.  He is on a ton of pain meds and very out of it.  I am certain we are at the end of the road, he doesnt eat or drink nearly anything for days.  We trudge to the onc, (Tuesday) but he is just too sick to even attempt chemo.  They want to do another CT scan.  We go back (Wednesday) and he is too sick to do that too.  (The contrast makes him so ill he hates them)  Thursday comes and he has excruciating stomach pain.  All this time he has been in pain and I have never seen him double over, curled up in a ball on the floor, tears in his eyes.  Hospice says to double his pain meds.  We do.  They say he needs the infusion pump for pain, but he needs a PIC line.  Heaven forbid the VA pay the outside hospital to do it so we trudge down here AGAIN on Thursday.  But he has to be evaluated, and sit in urgent care, and blah blah blah.  They want to do an xray to make sure its not an obstruction.  If it is, he will need to be transferred to the bronx (another hour away) for emergency surgery.  More blah blah blah.  It's not an obstruction, but now its too late to get the PIC and he will have to be admitted.  

Friday am - he gets the pic line.  We think we are going home.  But they seem to think its a national crisis if he gets the pump and wont approve it without trying ANOTHER set of oral meds.  So we have to stay AGAIN to see if the oral meds control the pain.  Since he is there he is convinced to do the CT scan.   New meds, scan done, he rests nicely. 

Sat am - we are going home.  But then the stomach pain happens again - he is beyond miserable.  Can barely get out of the bed. And it's the weekend and no one has a clue.  Lets change the meds AGAIN and monitor for another day.   He feels pretty good the rest of the day. 

Sun.  Same exact thing.  Within an hour of getting up he is in terrible pain.  Can barely walk at all.  Lightheaded, foggy etc.  Same deal.  Lactulose, senna, colace - all the things that he takes 3 times a day for months.  He goes to the bathroom - all loose and watery stool.  Tons of it.  Pain subsides - fine for the rest of the day. 

Now we get to today (Well yesterday now)  I am SO SORRY for the novel but I can hardly ask for input without telling you all this right?

We meet with the dr on call, and the oncologist and the palliative care dr (who we really like).  Actually they are meeting without us and I walk into it.  The oncall has told us that he thinks the stomach pain is the latest tumor.  (he had one in the cecum, and one in the rectum, and the most recent it the splenic juncture?  Or something like that.)  He says the tumor has simply grown to the point that eating triggers a peristaltic  something and that is the pain.  He should get the diversion surgery.  Palliative care agrees.  Onc says well bronx wont do the surgery.  I say - this is totally different - now its a different place, with different pain, that could possibly be relieved by the diversion  Plus its NOT the rectum, so should be less risk.  Onc ignores all of us. 

He leaves and the on call sends an email to the surgeon in the bronx.  No answer yet.  His suggestion is to start chemo tomorrow in the hopes that it will shrink the tumor enough to relieve this pain and he can have some quality of life until his death.  

Now finally - the questions or thoughts I need feedback on.  

1.  My husband and I think it's a bit odd that he had NO stomach pain until Thursday and then horrifying acute pain that then passes.  You would think that if it was a tumor there would be a period of time with lesser symptoms first?   I suggested could he maybe have a virus on top of everything that was causing this stomach issue?  They said extremely unlikely and gave me that look - you know the one - I am clearly in denial of my husbands condition and we should just feel bad for her.  Am I delusional? In regards to this - he has had bowel issues for well over a year and NEVER has there been the foul smell there is now.  I suppose it could be from contrast but I am a mom - I know sick throwup smell vs. throwup.  Know what I mean?  Would the contrast cause that?

2.  We may not hear from the surgeon for days or even a week or more.  Palliative care Dr says to wait and see what surgeon says in case he responds very badly to the chemo.  If it makes him even more sick it could reduce the likelyhood of surgery even more.  But if they are right it will take weeks for the pain to subside, so shouldnt he start asap?  Assuming they will even do it because now the onc is saying he might be too sick for it.  (he tolerated the chemo quite well before, although he was in much better condition) If it was you would you wait?  Give it a go?

3.  Are there other options we should consider?  If the surgeon says no I will certainly ask for a reconsult at Sloan - but that all has to be approved by the va.  He had a hemecolectomy in 2010 and this all started in 2015 with a liver dx.  But he Still 18 months later has a clear liver after sbrt and ablation.   We are still a few weeks from testing the hep c issue. 

His CEA is 31 now.  Hasn't doubled since March or April but close.  The CT scan indicates that the tumors have grown - the worst was just under 1 cm of growth.  In my mind this is fantastic news - it hasnt spread, it hasnt come back in the liver, and there are no new tumors in the colon.  They don't seem to be very happy with it.  But he hasnt had treatment in 8 months!?!  Of course it will grow no?

So that is the story - a lot of it anyway.  I would also like to point out that I brought him food, and he actually ate some well over 2 hours ago, and no stomach pain.  (Peristaltic pain huh? )  Part of me wants to just ignore all these Dr.s - I have virtually no faith in any of them here.  If the pain doesnt return, go with a virus, let him rest for a week and start chemo then.  

Maybe I just needed to dump all that - but I know you all are such an amazing group full of ideas and experiences and resources.  He is not ready to throw in the towel so if he wants to fight I want to help him fight in any way that I can.  If you got this far I thank you from the bottom of my heart!  Wishing you ALL a restful painfree evening.  

Alyssha