Postby MrPleistocene » Thu Sep 15, 2016 2:30 pm
Most health systems will have a messaging system, mychart or the like. Its effectiveness varies on the system and the specific Dr., but I would start giving it a go. Chances are your oncologist's NP will be looking through these and be able to answer most questions quickly, or pass it directly up the chain. From your post I didn't get that chemo was open ended, just that you will have a chemo pump you take home, usually for a few days. They will go over the protocol, as it might be a little different each place.
Generally, on infusion day, you go in and they hook you up to an infusion pump, sometimes give you an extra little push of an agent. You will sit there for a couple hours while you get the oxy, maybe leucovorin or other things ordered by the onc. Then you get a small battery powered pump that will go into your port. This will run for a couple of days. The tube is under your shirt. It just looks like you are carrying a small camera bag. At the end of the allotted time, the pump is taken off. I did this back at infusion, but I know some people do it themselves (or their brave spouses do it, more accurately).
The primary discussion, I would start with your doctor is what is the purpose of the treatment. My guess is, this will make you feel much better moving forward. I was Stage 3, and I know there is an enormous difference between the two. However, even within Stage IV, there are many differences.
So, ask the Dr., what will the chemo accomplish? After chemo, what are we hoping to see? (*Honestly, I wouldn't recommend these questions to everyone, but your case is a bit different*)
Depending on your personality, you might want to really get nuts and bolts, but I think, in your case, just getting a feeling from the Dr.'s side what their perspective is will give you at least a sliver of peace.
If you feel yourself anxiously churning and being seduced by the never ending torture of Dr. Google, another place to look is at administrative stuff. With an official Stage IV diagnosis, you could have quick short and long term options through Social Security Disability Insurance. I wrote it out because this is insurance. A system you have been paying for in case you have a serious health event. Many people are able to keep working and working helps them thrive through treatment. Just in case, know that there will be options if you need a few weeks/months off.
There is no splitting hairs; This is serious. As you noted, much less serious than it would have been if it weren't discovered until later. Be grateful you have begun. Lean on this board. Write your doctors, especially the oncologists. Any good oncologist likes to hear from their patients.
DX 11/09 RC Stage IIIb
12/09 Chemorad w/Folfox
Surgery 4/10 LAR, Removed Seminal Vesicles
Clean Margins, T3N2M0, 4/19 Nodes
FOLFOX 6/10-11/10
6/10, 10/10, 1/11 Clean Scans, Normal CEA
12/10 Bi-Nephrostomy
12/10-2/11 HBOT
2/11 Reversal