Hello Everyone!
First I would like to thank all of those that are on the site. You are tremendous! I've been lurking in the shadows while trying to deal with my own situation for the last week.
A little background:
My family and I moved in with my father last June to help him financially so he wouldn't lose his house (that's a long story LOL). I am married with 3 sons, but only the youngest lives with us (he's 15). I am attending full-time college courses online so I am able to take Dad to all appointments.
Just after Thanksgiving '08, my father burned his tongue and was still having a "numbness" in January when he saw the dentist but it was better than November. In May '09, he went back for another cleaning and mentioned it again. A biopsy in June '09 confirmed an SCC at the left rear. No stage has been given.
My father is an ex-alcoholic (10 years sober) and smokes 3 packs/day. He is also a type 2 diabetic with high cholesterol and high blood pressure. MRI and PET show no further spreading.
The Plan:
7 weeks radiation
The Problems
In early June, Dad weighed 203. The biopsy caused severe jaw pain and Dad basically began drinking Slimfasts just for nutrition. In August, it got so bad that he was going into altered mental states 2-3x a day as his blood sugar dropped below 50. No matter what I said/did, he didn't want to eat until he was altered, and then he'd listen.
When RT began on 8/27, I found out he'd lost 35 pounds over the summer (He's now lost 40 pounds, down to 163). While I'd been making soft foods, he just wasn't eating enough. I've tried Boost, Ensure, Glucerna, milkshakes, anything to boost his caloric intake and blood sugar. He would tell the doctor he would drink 2-3/day and maybe drink 1 if I really got on his case. At the most recent appt with the ENT, I mentioned the problem (because he wasn't) and it was agreed upon that he would get a PEG, which was put in last Wednesday (more on that in a minute). The Dr at the hospital wants to be more aggressive and start chemo (we live in a rural area, RT is an hour away, ENT is 2.5 hours away). We have an appt with the ENT on 10/6 when he gets back from vacation to determine if chemo will be necessary.
Back to the Peg...It was put in Wednesday morning (9/16). Dad's blood sugar was low (no kidding, you idiots, take him off the insulin, he's not eating!!! Sorry...still a bit mad over 6 weeks of altered states) so he was kept overnight. Released the next day and temporarily off insulin. Thursday night, around midnight, Dad discovers the area bleeding. He stays awake all night and doesn't inform me until I wake up at 8am. I take him to ER. Surgeon that did Peg shows and after 6 hours and it still bleeding (yeah duh, it's been doing it for 8 hours already) decides on surgery to find problem and finds vessel that needed to be cauterized. Dad came home the same day.
In case you haven't realized by my subject line or post, I'm a bit exhausted and fed up. Dad is one of those "Yes sir" men to his doctors and then doesn't follow the advice, leaving me and my family throwing our arms in the air. Once I came to realize this (late August/beginning of September), I no longer sat in the waiting room and now attend every meeting with questions in hand.
I realize this is the longest introduction I have ever written, but it just all came spilling out because I know all of you will understand...
I do have a question on metallic taste, but will head to the correct forum.
Last edited by Kimba; 09-22-2009 08:51 PM.
