Brody still battling significant nerve pain

The last few days have been extremely difficult.  Brody has been having several episodes of intense nerve pain in his leg (and sometimes his back).   They can last from 10 mins to well over an hour at a time.  Yesterday, it seemed like as soon as he finished with one episode it wasn't long before it started back up again.  They seem to happen with much more frequency whenever Brody is awake.  Sometimes he is awakened from his sleep by them but usually once he is asleep things calm down for hours at a time.  This is motivating us to try and let him sleep as much as possible right now until we can get better control of the pain. 

 

Nerve pain is extremely difficult to treat.  Usual pain medications do little to stop the pain.  The medications given for nerve pain can take 2 to 3 weeks to really come on board and start working.  Brody has been started on Neurontin, Clonidine, high CBD content Hemp Oil, Ativan and Lidoderm patches to help combat the nerve pain.  Amitriptyline was also considered but it wasn't started due to concerns of QT interval prolongation.  But so far we have not seen improvement overall.  The Ativan does help calm him during the episodes and then once the pain finally subsides, he's tired from the Ativan and falls asleep.  We consider sleep a good thing day or night right now since there are much fewer problems if he is sleeping.  Another bad thing about medications to treat nerve pain is that in a very large percentage of people they simply still don't work even after a few weeks.

 

We talked to the Advanced Illness Management Team yesterday about the possibility of doing a nerve block.  The doctor to do this seemed a little reluctant to consider a nerve block just yet.  She explained that this is the most invasive option available to manage the nerve pain.  She wanted to give the Lidoderm and some of the other options a little more of a chance.  She did say that she will go ahead and look over all of his scans and start mapping out how to perfom the procedure in case it soon comes to doing the procedure.  She wants Brody to try a TENS unit today too. She will back today to talk with us more about how Brody's doing and whether to move forward with a nerve block.  Although the nerve block is invasive,  I want him to get it.  I can not bear to watch him suffer for weeks waiting for the medications he has started to hopefully work (We don't even know if they will work).  Plus if his tumor is getting larger, I can only imagine that things will get worse and worse in the nerve pain department. 

 

Yesterday was the hardest day for me in our cancer battle so far.  Brody was suffering terribly and there wasn't anything I could really do to help him.  This pain has so far just been completely unmanageable.  On top of that, I know he's dying.  I am praying for miracles but I know he's dying.  When you lose hope, getting through this feels impossible.  My biggest fear all along has not been that Brody would die.  It's always been that he would suffer terribly in pain before dying.  Right now I feel like I am living my greatest fear.  The only thing that is getting me through is the hope the nerve block will work and focusing on just trying to let Brody sleep in the meantime so there are less episodes. 

 

Brody will be getting anesthesia tomorrow, to help him get a PET CT, MRI, NJ tube placed, and nephrostomy dressing change.  I am hoping he can also get the nerve block procedure tomorrow too while he's under.  Brody normally does the scans with no sedation whatsoever but he has been in too much pain to lie still for the scans so needs the anesthesia for these.  The scans will serve as a baseline we can use later to determine if the new chemo he is starting is working or not. 

 

Brody is certainly very frustrated/angry with everything that is happening to him.  But, he is pulling through things one episode and one moment at a time.  When he does have moments that he's awake and not in pain, he is still happy and just concerned with the next fun thing to do.  He doesn't really dwell and stew over all he's going through.  But, he's longing for home and wanting to feel half-way normal again.  We are doing everything we can to make that happen.