Paliative Care

I’m back with an update – but I must tell you that there isn’t a whole lot of good news in this post.  I had my radiation procedure on January 11^th, which went without incident.  However, the exhaustion I expected afterwards never lifted.  January and February seemed to just slip by as I logged about 16 hours a day sleeping, or at least attempting to. 

 Last week, I had a follow up PET scan to determine the effectiveness of the radiation and it was a bust.  My CEA is at an all-time high, my bilirubin level is well into jaundice range at 3.5 and the cancer has continued to spread.  I knew going in that the radiation procedure only works in two out of three cases; unfortunately I am in the other third.  But, it was worth a shot.

Robbie and I met with Dr. S on Tuesday to go over the results and see if there is anything else to be done.  There isn’t.  The “Plan B” drug – Stirvaga – that we talked about in December cannot be given to patients with my bilirubin level.  In addition, Dr. S has been trying it with others and evidently, it is quite a bit harsher than originally predicted.  In any event, the cupboard is bare and there are no treatments left to arrest my cancer.  From this point on, we will just work on issues of comfort and pain relief. 

The first item for pain relief will be some radiation. I have had a lot of pain in my hip this past month or two, which I thought was tendonitis from spending so much time in bed.  But, it turns out that the cancer had spread to my bones.  Some local, external radiation should help alleviate the pain and attacking the cancer there can also lower the risk that I break my hip, which I am now more likely to do.  Robbie and I will also meet with MSK’s hospice people to put together a management plan to help as this gets worse.

As for timing, Dr. S (as always) will not make a prediction since he cannot make one accurately.  But he did agree that I have “weeks or months” left.  He does not expect me to decline immediately – in fact we made a follow up appointment in six weeks which he said he expects I should be able to keep.  However, at some point soon, my liver will fail or some other bad event will occur – like an infection – and I won’t last long after that. Until then, I plan to do my best to stay as active as possible and enjoy life as much as possible.

I would like to say thank you to all of you who have been so supportive over these past 4 and ½ years.  It is a tremendous benefit to me and to my family to be able to stay connected and live as normally as possible.  Your kindness, humor and companionship have made a big difference and I can’t thank you enough.