A patient patient

I'm going to have to learn to be a patient patient.

The CT scan showed there is still a hole in my duodenum and I have to give it time to heal. So no food, no drink and I will be here for a while - probably another week. That's the hardest part for me. I'm trying to get my head wrapped around the fact I'll be stuck in this hospital bed for another week.

When I got the news, I was walking around the floor. Upon learning the long-term nature of my stay, I steered my IV pole to the elevators to go outside. I was feeling rather claustrobic with the idea I'd be stuck in this place for so long. I pushed my IV pole outside into the beautiful fall day and took some deep breaths. I'm going to have to incorporate some trips outside or to other floors during my walks to get some fresh air and change the scenery.

And that's part of the problem. I'm stuck in a beige room with a tiny window that I can't even see out of due to the position of my bed. All of the other rooms have giant windows looking out over the city. And the view from the 9th floor is quite beautiful, if you can see it. And though I have private coverage, many of those rooms go to those who have infections. Some are available, but unless I can get a good bribe or something going on, I doubt I'm going to get one of those. A private room with a view would help make this long, tedious stay a little easier. Sigh.

The next steps will be getting a peripherally inserted central catheter (PICC) line inserted so I can get some total parentenal nutrition (TPN) or beige liquid food in a bag that is infused directly into my liver. It avoids the stomach and gives me some nutrition, which I need to heal. The problem is, the wait list for the PICC lines are long. The doc is hoping I will get one by the weekend. Seriously? You'd think my situation would be priority.

And if I can get rid of some of the other lines connected to my body - the catheter, the NG tube - I will be less tethered and able to get up by myself to walk around or items for myself. The NG tube is connected to a machine on the wall and the catheter just makes it more difficult to get up. It can be done, but I need help to do it. If those were gone, I'd just have my IV lines and my two drainage collectors that I could quickly collect and be on my way. A bit more freedom would make this a little easier.

My doc said he'd check the healing of my stomach with a CT scan again on Monday. I think he forgot that's Thanksgiving Monday and therefore a holiday. So that's why I suspect I'm here for at least another week. And then after my stomach heals and they put me on clear liquids, they'll have to make sure I am processing them fine before moving up to solids. That takes a bit of time too. Just thinking about it makes me tear up. I'll come to terms with it, probably overnight, but it's difficult for me to accept tonight.

I guess the good news is I now know there was an ulcer that caused a hole and it's healing. But I'm not 100 per cent sure what caused the problem. It could have been the Regorafinib. If there's even the slightest chance that's the case, I will not be taking it again. But I need a conversation with Dr. H. to determine the best next steps for my cancer care. I suspect it will be chemotherapy in about a month. I've had it confirmed by a couple of doctors who were in my abdomen, there's lots of cancer in there. It needs to be treated so it can die!

So first some healing and then some killing. We know the chemo works and even though it sucks, I need to get rid of the cancer so I can live. That's the bottom line.

Tina