On the whole, I’ve had better weeks

I did a search for how to post a picture here and came up short. When I update caringbridge tonight I’ll add one there. Of course, it’s also on Facebook. Happy to have friends from here on my Facebook page. I am Lisa S t e g a l l (no spaces) on Facebook.

If I knew how to post a picture here, I have one of me on my bike for the first time since diagnosis.

Quick update on me.

5 more days of IMRT to go. Yesterday was my last chemo day with cisplatin. I had to get a 2d dose of iron because I’m anemic (got a bag of iron the week before, too) and this is my last week of wearing the 5FU pump all week. It will come off Friday, as will the picc line they put in my other arm for the IV antibiotics I’ve been taking since I spent most of February in the hospital with infections and dehydration. I think they will keep me on an oral one while they are deciding if they can remove my bile drain tubes, because I’ve had lots of problems with them.

My oncologist said that since I only have 2 days of radiation next week, I don’t need the chemo then. They are sorta like snow days, tacked on at the end. I would have finished radiation this Friday, but I ran a fever one day and was told not to come and the other day, the machine was down, so I’m making them up next week for the full 30 days.

I will go Monday and get a 3d iron infusion. They said anemia happens with cisplatin particularly. No wonder I feel draggy and tired.

Still not great appetite. Wondering if that ever returns. I hover between 117-119. I think everyone would like to see a number closer to 130.

And then …. I wait.

I’ll see my oncologist the next week (I’m assuming he’ll do labs then), and we’ll schedule my scans. I know they want at least 4 weeks to let the radiation finish and to let the inflammation die down to get as good a picture as they can. My pre-radiation scans were really hard to read.

And then … I don’t know what comes next. The scans will be key.

I am trying to get some normal life back. I rode my bike about 6 miles Saturday and it was cold and windy. I’m signing up for a 23 mile charity ride this weekend. Last year I did the 30 and 50 mile routes of these respective rides without even thinking about it, to give you an idea of how my “then” versus “now” is.

Still, my oncologist was pretty amazed I did the 6 mile ride at this point in treatment. He said I looked fantastic (and I don’t mean looks – heck, he’s probably never seen me with a lick of makeup on).

So, I have no idea what the future holds, but I’m trying to hold on to some normal life (whatever that is anymore). I still feel that 2d shoe hanging over my head, ready to drop at any minute.

What is the balance when you are done with active treatment, but still aren’t a candidate for resection (and trust me, if they say no here, I will be getting 2d, 3d, 4th opinions).

Lisa

What not to say to someone you haven’t seen in awhile:

Oh, I thought you died.

Seriously, I ran into my across-the-street neighbor this week (we normally keep very different hours and don’t see him all that frequently anyway). He did not know I have cancer, but that’s what he told me. And, he apparently told other neighbors I had died.

I was … speechless.

Other than that, I have 7 days of IMRT left (out of 30). My oncologist says next week is my last week of cisplatin/5FU (since I only have 2 days of radiation that following week).

I guess I have to wait about 4 weeks for scans after this to let the inflammation go down. I don’t know what to do with myself without daily/weekly doctors appointments. I don’t think I’ve had a week since October without some medical issue.

What to do after the scans is the big question.

Lisa

Well, I have not been taken to a witness protection program or anything, but I’ve been pretty quiet here since early February. I’ve spent more days in-patient at Baylor hospital this month than I’ve been home. I’ve written about my ‘misadventures’ more on my caringbridge page if anyone wants to be entertained.

Suffice to say, I have a love/hate relationship with my biliary drain tubes. Can’t live with them and can’t live without ’em. It’s been an interesting month. I am hoping to get cut loose today and go home. If I can remember how to get there.

Lisa

Thanks Marion, just added them to that thread.