Pain Management & Radiation

Hi all,

Sorry for the delay in posting - the last several days have been very hectic.

It turned out that we had to delay chemo again - Scott was admitted on Sunday in order to get his pain under control.  Last Wednesday night, he was trying to shimmy into bed and felt a sharp pain again - similar to what happened about a month ago after getting sick.  He couldn't move again and spent days like that.  His Dad brought over a recliner and Scott was able to get a tiny bit more comfortable, but the pain grew to be unmanagable - plus he started running fevers at night again - so we talked to the Doctors over the weekend and he was admitted.

He is still at the hospital (Sylvester inpatient wing) and probably will be for the rest of the week.  These past several days have been the hardest on him, by far.  The process of getting the pain under control is not easy and takes quite a bit of time.  They have to find the right medicines, the right doses, and increase in such a way that does not cause other problems.  In order to go through xrays, he had to get up on a hard, flat, high xray table and that was horrible - but he had to do it to make sure no bones are broken.  (They are not, thankfully)  They still don't know exactly what's causing the pain, other than the assumption that the tumor has grown and is pushing up against many nerves.  I've discussed this on the blog before - the tumor is surrounded by major nerves, like the Siatica.  They are trying medicines - more than I want to list out here - and not much is working so far.  One of the likely next steps is some sort of injection - either local nerve blocking or even an epidural.  They have to do something significant to get Scott out of pain, able to move at least a little bit, and be able to get through his treatments.  There was no way he could get to and through chemo sessions in the condition he was in.

The other change is that the Doctors want to start radiation as soon as possible.  We're still trying to understand the differences, but this is not the full 6-week radiation course that we discussed months ago - this is daily high-dose radiation to shrink the tumor and get him out of pain.  We're hoping the radiation works well, starts shrinking the pelvic tumor and, after a few weeks to recover, start chemotherapy again (the new protocal he was going to start on Monday).  As you've seen, plans are subject to change daily and we'll have to see what happens after pain management and radiation for a couple weeks.  The last time I mentioned radiation here I said it wasn't an option because there is a change that too much radiation could prevent more chemo later.  That's still a chance, but one we have to take right now.  The most important thing right now, by far, is getting him out of the unbearable pain he is in. 

The tumors in his liver are not being addressed by radiation right now - the pelvic tumor is the major priority, and again, if he can get back on chemo that will start to fight those.

He is tired and so so so over the pain, but he's still fighting hard.  He has endured more than anyone should ever have to and still has more to go, but he's done amazing.  So amazing.  He's so strong, and even though the pain is getting to him, Neil and I are trying to keep him strong and positive.  One of us is with him all the time. 

We're hoping that they can manage the pain enough to start radiation tomorrow.  I'll write again in a few days with an update.  Please keep your words of encouragement coming for him - he needs to fight and stay strong, and the love of his family and friends helps him do that.

Thanks for your love and support.
Amy