I woke up so startled this morning, I can't shake the fears that have settled in me.

My mom has been doing really well in all areas except for the lymphedema in her face, particularly her jaw area. I understand that from all the radiation, brachytherapy and the left neck dissection that swelling is to be expected. If I had to describe how she looks I guess I would say like Popeye, the cartoon character. She is in an incredible amount of pain, she is currently taking approx 20mg of oxycodone, fentyl patch 25mg changed every 72 hrs, neurontin 3capsules, can't recall strength and the bottle is by her bedside, advil-probably 800 mg a day.

At her last visit with the RO he said that left jaw had gotten dosed while she was in brachy. She had a mouth guard that she apparently removed more often than not while she was sleeping. She was pretty medicated and left alone in her room for the 3 days, the nurses came in and out fairly often and she said she saw her 'wizard', her RO - his name is Harry, and she's a huge Harry Potter fan-more than mostly anyone else. Anyway, he said that he would watch her, but I clearly could see the concern in his eyes.

I don't know how to express my fear here. I think it is seeing her face so swollen, and her great discomfort. She has been doing so well, and this week things have changed...even in the last few days she looks worse. I can't stop the tears now that I have opened up about this. I know how everything can change with this disease and it scares me beyond comprehension.

Is what she is going through normal? I have been trying to read the posts to see what others have gone through but I can't seem to comprehend what I am reading, extremely distracted-guess it's from my fears? I am going to send off an e-mail to her RO and call the office as soon as they turn on their phones. She doesn't have an appt today, but I have to drive to HUP anyway to pick her prescriptions-somehow the oxycodone one was lost...think I may need to take control over certain things again until the fog lifts. As I write this I am thinking how she was fine earlier in the week, and suddenly......

I need to gain my composure (sp?), I don't think I can until I understand more. I keep trying to get my game face on but it's not working.

Thank you for any info you can share on this, and as always, for your love and support.
Hope everyone has a nice weekend.


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.