Two days ago everything was going well. The Oncology Doctors all agreed that things are going reasonably well, I was issued the prescriptions to start chemo today as we were expecting the picc line antibiotics to be done tomorrow and my weekly blood work has been coming through clear of infection. Good news, right?!?
This morning I got a phone call from the HPTP clinic (home therapy clinic for the picc line) telling me that they are extending my antibiotics for 2 weeks because I haven't had an MRI confirming that I am infection-free. The notes to request one were on my file two weeks ago - the RN who gave me cathflow (to clear a plugged line) even asked me about it then. No one followed up until today. The picc line has been a huge pain in my arm/chest for over a month now. I felt it every time a dose started and for the entire hour it ran for (every 4 hrs!). I haven't been sleeping because it is so uncomfortable & limiting. I was incredibly frustrated with the nurse who called and told me it had to stay longer - not only would that mean a delay in the chemo part of treatment, but also a delay in returning to a semblance of 'normal' life.
Then, while waiting to go in for my radiation apt this afternoon, the machine started beeping at me (for the 3rd time this week...) that the line was blocked, again. After the radiation I went straight over to the HPTP clinic. They tried to flush the lines and couldn't get either line to flow well enough to hook back up to the pump. The nurses started discussing putting in an IV (which collapse within hours) so they could cathflow me again (would have been 3rd time) when I told them that I'm DONE. I have dealt with one of the nurses present many times over the past month and she understood. She explained the potential consequences, but after discussing my options with all three RN's who were there this afternoon - I am DONE!!!! Picc line is removed and I don't even have to go back in and argue with anyone tomorrow!!!! I had to sign a form stating that I understand the possible consequences (AMA forms), but at this point I don't even care anymore. I will follow up with the Oncology pharmacist to see whether or not I should fill the oral prescription I was given, but that can wait until morning. I am just SO relieved to have that picc line gone - no lifting for 24 hrs, but it's done and I don't even have to wear my awesome fanny pack anymore :-)
I feel like I won a huge battle and MAY even get more than 3 hours sleep tonight!!! (fingers crossed anyway!)
Heather, on CTV I heard that a drug called AZD8055 mixed with (TMZ) Temozolomide can extend life by 30%. The results were published in "Clinical Cancer Research" and the clinical trials started in the spring of 2015. They are doing this at 2 Calgary institutions. Hotchkss Brain Institute (HBI) and Southern Alberta Cancer Research Institute (SACRI).
ReplyDeleteWorth asking about!