Hospital Stay and Change of Plans

Well, I haven’t updated because honestly, there hasn’t been a whole lot to update.

We’ve been in a holding pattern for weeks.

After my hospital stay last month for sepsis, they found some spots on my liver.  We were told that could be the infection causing abscesses or it could be more serious.

We had scan after scan but they all were inconclusive so long story short, a biopsy was ordered but they couldn’t get me in for weeks.  So we waited.

We completed the sixth and final round of chemo for the first phase of my treatment.  For those who haven’t been following along at home, my treatment plan had been six rounds (12 weeks) of chemo and then a rest period followed by the whipple surgery and then 6 more rounds of chemo.  In a perfect world, that would have been the plan and I would be done.

But it’s not a perfect world and cancer is an unpredictable bitch.

So we finished the chemo but I was not recovering well from the last round.  It normally took me about a week to start bouncing back and getting my appetite going again but this time it was a no go.  At three weeks, I was still horizontal most of the time and not eating well at all.  I ate because I had to but I would get really bad stomach pains after and have to retreat to bed to sleep them off.  It wasn’t fun but I had been told all along that the chemo side effects were cumulative so I figured we had just hit that point where it was taking me a long time to recover.

And then on the first of this month, I turned yellow again.

Hello jaundice, my old friend…

What we thought would be a fairly quick trip to the hospital turned into an almost two week stay.  I was admitted on the 2nd and just got discharged yesterday on the 14th.

So again, quick recap for those not in the know, when I was first diagnosed with the cancer, I had a blocked bile duct that had caused some jaundice and that is how we found out.  That was back in May.  At that time they put a stent in my bile duct and the jaundice went away, I think it took a couple days and I was home.

So, we get into the hospital, they do a scan and see that my stent looks blocked.

I get admitted, they do an endoscopic procedure with the intent of cleaning out the stent and find all kinds of sludge, food and pus.  I’m infected and likely this was what was happening last month when I got sepsis, they just “never found the cause” at that time, treating only the infection.

So in cleaning the stent, it pops out and they end up replacing it.

The next day my numbers go up instead of down and the hospitalist that they assigned me tells me that it is fine and sometimes it goes up before it goes down and I think you can go home. Meanwhile, after that procedure, I have developed tachycardia that no one seems to want to hear me talk about.  They finally order an EKG, tell me I’m fine and the doc wants me to go home.  I tell him I don’t think I’m down for that and I don’t want to leave until my numbers are going down, also it still hurts after I eat and now I’m eating pain pills after trying to choke down food.

The doc talks over me but finally agrees that I can stay another night (I’m glossing over a LOT here, about how this doc was NOT hearing me and made it seem like I was bothering him and his day by trying to advocate for my own health).

I talk with my nurses about this and one of them tells me this isn’t the first time she’s heard this about him and that she feels he also treats the nurses on the floor quite misogynisticly and she is going to report my feelings to his higher up.

The next day my numbers have gone up higher still, I’m in pain and my doc reluctantly agrees to let me stay another day though he is insistent that the stent is fine and that it’s my liver lesions that are causing the problem.

My tachycardia is still happening often and they do another EKG which they say is fine but they relent and move me to the cardiac floor so I can be observed closer.

That day I finally get to see someone from my oncology group and we talk about what is going on.  I ask him (because the hospitalist keeps insisting the stent is fine and it’s my liver) what he thinks is going on and he said he thinks the stent is the problem.  I ask him to please tell the other doc that and he does.

FINALLY, we get heard and they decide to do another endoscopy and see what’s going on.  Surprise, surprise, they find that the stent is full of food, sludge and pus AGAIN.  They clean it out but they tell me after that because of the way that my bile duct is malformed from the tumor, it’s likely to keep happening.  Apparently there is a part of my small intestine nearby that is malformed as well and it appears to just be sweeping the food right into the stent.

The GI tells me there is no great way to solve this that isn’t invasive and would cause more problems so he wants to talk to some colleagues and will probably have to do another procedure the next day.

Next day, they go in again and put a mesh stent on the deformity on my small intestine in hopes that will stop the food from being directed into my bile duct stent.

Finally, my numbers start going down.

Long story somewhat shorter, they finally put me on solid foods and not only do I have an appetite, but I can eat without pain!  Yay.

I stay a few more days with my numbers continuing to drop and even though I’m still yellow, they discharged me yesterday because things appear to be on the up and up (knocks wood).

The bummer is that I am now on soft and pureed food for the foreseeable future.  They are super cautious about not getting food stuck in my stents and I get it because I don’t want to have to go back in for another two weeks for infection and more stent cleaning.  We have a GI follow up next week so I’ll know more then.

NOW —

During that last procedure, they were able to take a biopsy of one of my liver lesions finally.  The news is not good but not entirely unexpected.

The cancer has spread.  The spots on my liver are cancerous and the chemo has failed.

This means I don’t get my whipple surgery.  The one shot I had at getting the tumor removed cleanly or at all really.

So we have a follow up with the oncologist on Friday but basically we are rerouting and in the time since they discovered the cancer in May and now, there has been a new drug approved for treatment of pancreatic cancer.  It’s an oral medication that could help shrink the tumor.  That is our next course of action.

So basically my cancer has been downgraded from possibly curable to treatable if this new medication works for me.

This has been a lot for me to digest in the last couple of days and I’m obviously not thrilled, but I’m glad that there is another option because as I understand it, the chemo that I received is the only real option they had for me chemo-wise and I’m what they call a “chemo-fail” on it.

So we now recalibrate our plans, we take the new meds and we hope for the best.

But it sucks. This wasn’t supposed to happen.