Saturday, October 13, 2018

Fuck Cancer

Jen's latest scan showed further progression.  We weren't surprised by this as her loss of function has increased since we began the trial.  Jen's right side weakness has increased.  Her balance is significantly worse and she now has zero use of her entire right arm/hand.  Jen is now in a wheelchair full-time.  Jen is also having increased cognitive issues.  There is definitely a lot of inflammation present which could be indicative of her engaged immune system and can account for some of the function loss, but there is also definite tumor growth as well.  The only positive is that Jen hasn't had any seizures for several weeks now.

The last month has been difficult emotionally as well as physically.  On Jen's bad days it has been extremely difficult just being able to transfer Jen from a wheelchair onto a toilet or into the car.  Some days are better than others, but as I mentioned in the last post the overall trend has been downward.  I don't think a day has gone by without Jen crying over her inability to perform basic tasks.  The experience has been pretty heartbreaking.

If we suspend all further treatment, Jen probably has about 6 weeks left.  If we continue pursuing treatments, we may be able to add a couple of months to that.

In spite of everything, Jen wants to keep fighting.  There have been 2 occasions where after a particularly challenging event, Jen has broken down and said that she was done fighting.  But, afterwards when she was less frustrated, she decided she wants to keep fighting.  Every other discussion about whether to continue or not, Jen has been resolute in her wanting to keep fighting.  One of my greatest concerns is that with Jen's declining speech and cognitive issues, she may reach a point where she no longer wishes to continue and I may not be able to understand this desire.  But for now, I am confidant in her resolution.

So what is left to try.  We are essentially throwing the kitchen sink at the cancer.  On Friday, Jen had another infusion of Avastin as well as Keytruda (two drugs Jen has taken before and I have discussed in this blog previously).  She will do another round of Car-T on Monday, and we are hopefully adding in a drug to target an EGF mutation that exists in Jen's tumor.  This drug has already been denied by Jen's insurance and we are waiting on a request to the drug company to cover the drug under compassionate use.  This was a process I started about a month ago.  There is also the possibility of further radiation.  As much as we would like to resume Optune, it isn't possible at the moment with Jen's recent surgery and skin issues.  In fact there is about a 20% chance that her sutures may reopen a little from the Avastin.  This would create a further complication that could lead to infection.  As I mentioned earlier, doing all of this will probably only buy a little extra time, but there is always a (very unlikely) chance that the combination of things Jen is trying will produce an exceptional effect that could buy a little more time.

As always, please keep Jen in your thoughts, prayers, and hearts.