kris00j

Happy Thanksgiving everyone from Princeton Hospital. I’m still here. The pain has dissipated greatly, thank God. The Dr.s are still torn about whether the pump is infected or not and whether that means removal of the pump or not. But now they are yelling at me about the pneumonia and not using my breathing thing and getting up an walking more. So today while I wait for our wonderful (ha!) Thanksgiving Dinner I guess I’ll try to be a “better” patient.
I called Dr. Kemeny’s office to make sure they were being updated on the tests, etc. and her nurse practitioner said they don’t believe it’s the pump. Of course, she doesn’t want it to be the pump either, as it’s “her” pump. She designed this one so if it goes bad I’m sure it bothers her a little more than other drs. I won’t say personal, since she doesn’t get that way, but she has the best professional reputation.
So I wait. I’m hoping to go home tomorrow where they will teach me to do home infusion i.v. antibiotics. Maybe???

I don’t have a lot of definitive answers yet. They are pretty sure the pump area has an infection. I’m not sure what that means, except for a trip to NY and a surgery. I’m afraid it means bye-bye pump. And that terrifies me.
I’m so emotional right now and don’t really know what “we” are going to do, but the pain is definitely real. And I can’t see much good about the pain. So not a positive nor hopeful post here today.

Here’s a new 3/4 update on my journey. Monday I had chemo (Gemzar only). I spent Tues., Wed., and Thurs. fighting a lowgrade fever. Gemzar usually doesn’t get me that quickly, but I wasn’t concerned. Thurs. I started feeling lousy, like I just wasnt with it. Around 3am I took my temp again and it was 102.9, but I wasn’t moving (I didn’t feel capable of driving if I needed to). So I took some Tylenol and went back to sleep, hoping the fever would break. Of course, it didn’t. Friday I called Dr. Kemeny and her office said to get to my “local” oncologist for blood work. My local onc is still an hour away. I called them and jumped in the car, where my fever was now 103.8 at Princeton. They did the cultures and sent me to the hospital. So now I’m alone, in a hospital an hour away from my home and don’t even have my phone charger! UGH!
Did I mention scared?
Here’s the update so far. I have pneumonia with no symptoms.
I also have an infection. They say it’s presumably around the pump site. All I know is that the one doc here says if the pump is infected it will be useless…. for those who have been following my journey you know I’ve had a surgery and 3 embolizations to get the pump to work and now I’m afraid it’s gonna be bad news again!
The hopeful news is there is no fluid found around the pump. So why does it hurt? Has anyone who has this had pain in particular places? Like maybe where it’s stitched into the abdomen??? That’s what I’m hoping for. (Oh, by the way, the pneumonia is directly above the pump.)
Then I can worry about where the infection is.
This is so frustrating.
Kris

I’m sorry to hear your insurance is being troublesome. I have Aetna, and although I never thought I’d say this, they have been pretty great. I still have lots of medical bills to pay, but I have an advocate at Aetna who calls me and keeps abreast of what I’m going thru. I don’t even check ahead of time for scans, etc. anymore. But they are covered, so I’m not going to complain.
I hope your insurance co. eases up on the necessary evils you have to go thru on this journey. Keep hammering away and hopefully you’ll get it cleared up with them… you need these tests to see how things are progressing. Tell them it’s much cheaper than hospital stays! Maybe that will work.
Kris

Wow, Lainy. I didn’t know that. Thanks for sharing that info.

Jim: Be my guest, but until I know further, your friend can’t borrow my troll. They will have to get their own!! I am actually sitting waiting to see the onc and then the surgeon and hopefully I hear the words I’ve been hoping and dreading to hear… surgery… I may have other options and I hope to post later today in the good news section! Really stressing right now…
Kris

Cindy: As Lainy said, anxiety is a part of our lives. I KNOW my tumor has shrunk, but that doesn’t help the anxiety level as I sit here and wait for my scan. Because I don’t know how much more it’s shrunk yet… And I’ve been a wreck this week as I think about meeting with my surgeon on Monday. The not knowing what is going to happen is very stressful, and my backache is through the roof the past few days, probably in part because of the stress (I’m sure mostly because of the chemo). I can’t wait to get thru Monday and know what the next step in my fight is going to be.
Even though I stress about this, I try to stay positive. I was told to use visualization by a friend of mine. So I have this happy craggy old troll that picks off pieces of my tumor and eats it. BTW, he showed up: I was trying to do pacman. The first time, he stopped eating. He was happy, but full. And my scan showed the tumor had shrunk. He came back a few times to eat and always stopped with some tumor left. The next scan showed the tumor had shrunk more. The other day he ran out of stuff to eat. I’m PRAYING that means the tumor is gone. Think positive!! If you think negative you get negative.
So from now until Friday here’s your homework: picture your tumor in a white light, or pray, or visualize the tumor shrinking however you want. But think positive! You can stress, but don’t let bad thoughts stay in your mind. Push them out with the good news you’ve read on this site.
Once you get good news it gets easier. I had a rough time trying to stay positive from April until July when nothing seemed to go right. But I kept trying to stay positive. And when things finally turned around, it was easier!
I will keep you in my prayers that your scan on Friday goes great and you are one of the ones that has unbelievably good results with the pump!
Kris