The new tumor on my mom's tongue was removed yesterday, but they were able to salvage part of the right side, so perhaps with the flap, rehab and rehab she'll have some ability to speak. Waiting on path report for tumor size and neck dissection results, hopefully there won't be any further surprises.

12 hour procedure made for a long day, I don't know how these docs have the stamina. Although I find the procedure interesting, the resident's blow-by-blow description of the operation almost made me lose my lunch and pass out. Glad it's over, now we can hopefully focus on a successful recovery and rehab upon release from the hospital in about ten days.

Your mom will be able to speak - I think I've mentioned it before we have people here who've had total glossectomies and they can speak - she will need a speech therapist and she may have trouble being understood but e neutrally ash she heals she should be okay. hugs and fingers crossed on the biopsy results

Hi Didier, I'm so glad your mom's through surgery. I hope her recovery is smooth --

Thanks everyone for the kind words, she's doing remarkably well. She was discharged from ICU after three days and transferred to a regular hospital room last Saturday. Once the swelling subsides and, with some luck, the trach and IV lines will be removed within several days, she'll transfer to an acute rehab center. Communication has been with a write and wipe board and a borrowed iPad that has a pretty cool communication/speaking app. I'm blown away by her positive attitude, I really am. I so hope this works out. I don't believe she's a candidate for any more radiation given her previous tx and chemo was really tough on her the last time around. Peripheral neuropathy developed and all sorts of other side effects were tough to handle. The docs did indicate, however, that some chemo might be necessary and they didn't exactly rule out radiation if we run into problems down the road. Crap. I don't know if that's a good idea given that she has ONJ too. I have to stop speculating and worrying, I almost drove myself crazy 10 years ago doing that. Thank you for allowing me a place to vent.

Dave,

I missed your posts earlier about your mother. I am so sorry to hear the news. You are a jewel and she is so fortunate to have you by her side. It has been such a rough road for so long for you. I'm encouraged the surgery seemed to go well. I'm hoping rehab goes well too.

Ed

So glad she is doing okay.. Hugs to you!

It's been two weeks with a few shots of optimism followed by a jab to the stomach. The path report showed no node involvement and negative margins, but some perineural invasion. That concerns me. The tumor board feels that observation is prudent given the overall situation.

Rehab continues to go well. Mom's using a walker during physical therapy, and the speech pathologist has her saying a few phrases while covering the trach. That brought a tear to my eye, it was an amazing moment. However, she wrote a note on her Write and Wipe board telling me that she was weak and didn't want any additional tx if things get worse. I don't know where this journey is headed.

didier,

As none of us really know where our journey is heading, you are not alone my friend.

PNI should raise some concerns, and is a scary thing...I know I've been there. All we can do is get the best medical advice available to us, and hope for the best outcome. The only things we can control on this crazy journey is our attitude, and nutrition. The rest is up to how the body responds to treatment and the knowledge and practice of our medical team.

Keep to hope, and take it one step at a time.

E

Didier:

Your mom's pathology was the same as mine - I also had perineural involvement but no nodes and clear margins - they gave me the option of radiation because I was in the middle of where they would recommend or not. I, for my own reasons, choose no rads. So far so good. I hope the same for your mom.

Thanks again, everyone. We're hopefully going to inch along and take each day as it comes with as much joy and opportunity as we're able to squeeze out. My best wishes to you and your families.