Hello everyone. It has been a long time since I have been here and I want to update everyone on Carol's progress. Unfortunately it is not good news.

After her surgery last August Carol was healing well (or so we thought) but began getting that damn pain back right below her left ear in November. She had a PET/CT Scan which according to the Doctor didn't show anything. Last month she had a CT scan that showed cancer on her lower lip. Surgery was scheduled for 2/9/11 that would consist of removing all her hardware in her mouth, removal of lower lip, using an Anterolateral Thigh Free Flap and rebuilding her mandible.

While in pre-op Wednesday am, the surgeon looked inside her mouth (which was difficult due to trismus), canceled the surgery and ordered another CT scan. The results are the cancer has spread along her left side of mouth, wrapping itself around the nerves. The surgeon said it was inoperable. He is to present her case to the Tumor Board today and will call tonight with, if any, options. He did mention possibly clinical trials or chemo which Carol said no to both. We both believe more chemo would be ineffective and put her in more pain than she already has. Carol never had a port and her veins are "blown out". Taking 1 tube of blood is very painful, WHEN they can find a vein.

Carol applied for Hospice which will provide comfort care and ensuring she has all her needed medications, enteral foods and equipment. It has been rough juggling between her medicaid with share of cost and charity on a monthly basis. Carol is still mobile and able to do most things by herself, but is spending more time in bed.

I do have a question regarding her medications through Hospice maybe one of you knowledgeable folks here may be able to answer. According to Hospice's pharmacy (??) they will not provide Carol's medication for her folic acid (anemia since 2/2010) nor her Levothyroxine (TSH went from 1.4 to 4.5)(thank you Charm for the info). All the other meds are "okay", 150mcg fentynal (recently increased from 100mcg), Lortab (breakthrough), gabapentin, anti-depressant, sleeping pills, lactulose. I explained to the nurse Carol's anemia and TSH level was a direct result of her treatments. Should I insist Carol continue those meds? I was pretty adamant about Hospice not changing her current medication regime...UNLESS it would relieve her pain and still be lucid and aware of her surroundings. The nurse also told us the Doctor may change her pain medications - Oxycontin was mentioned. Is Oxycontin viable for terminal head and neck cancer patients? There's just something about Oxycontin I'm not comfortable with. Carol has a high tolerance to opiates and pain. As she just got into Hospice, I can't see anyone denying her medications nor changing the medications until they have read her medical records. This has me leery and I'm not sure if this nurse would be a good fit. The Hospice doctor is scheduled to be here this week.

Sorry about the long post. A lot has occurred the past months and my attempt to "consolidate" information is feeble at best.

Linda