Appointments

Yesterday (12/30/09) I was scheduled for 4 more appointments at M.D. Anderson.
8 - MRI
10 - Radiation Oncology
10:30 - Dr. Martin, Dental Oncology
11:30 - Dr. Gidley, Head & Neck Center (ear specialist)

I won't go into details, but we weren't exactly kept on the above schedule. I guess I should learn now to plan on about 2 hours wait each time. We finished at 2pm and never got to see the dentist so that's been rescheduled for 1/19/10.

The MRI went fine. I've had so many now that I'm used to it. The tight space doesn't bother me... just close my eyes and go somewhere else.

Radiation Oncology
I met with a resident (didn't catch his name) and Dr. Adam Garden. They explained the procedure, risks & complications. Their hope is that the radiation treatments (daily, M-F, for 6 weeks) will stop future growth of the tumor(s). Of course, there are no guarantees and since I'm young, there's more time for them to re-surface. The treatments will start about 4 weeks after surgery. I'll go in the week before to be fitted for a mask so that each treatment hits the exact same spot each time. Each session should last about 20 minutes... plan to be there for an hour. Short term/temporary side effects are skin irritation, sore throat & dry mouth. Long term risks are hearing loss and tooth damage (I'll learn more about that when I see the dentist).

Head & Neck - Ear specialist
Dr. Osborn (resident) and Dr. Paul Gidley. So far, Dr. Gidley is, by far, my favorite. He spent plenty of time going over details of the surgery and asked several times if I had any more questions. Never seemed to be in a rush. I don't mind waiting if that's the treatment I get! Here's what I got out of what he said: There will be two incisions: 1 will follow the original incision and there will be a second one behind my ear. That's where they will drill into the mastoid bone to find the main branch of the facial nerve. They'll follow that up and clean up tumors as they go (I suppose). They have to start at the "beginning" because the nerves on my face will be full of scar tissue and it's easier to start at the beginning than jumping into that big mess. Also, if they end up sacrificing the nerve (pray they don't), then they'll have a "clean stump" to attach a nerve graft. We're anticipating having to have skin removed too because the tumors are so close to (possibly embedded in) the skin that it can't be separated. That will probably lead to a skin graft. (I meet with Plastics on the 19th too.) With the "basic" surgery of removing the tumors and also doing a skin graft (not counting on a nerve graft), the surgery will take 10-12 hours. Good thing I'll be asleep! I feel sorry for my family. It will suck for them to wait. So the hope is that they will preserve the facial nerve, however, this type of surgery (and the fact it's my 3rd) is very traumatic to the nerve so I've been told to expect at least a temporary weakening (and/or paralysis) on the right side of my face. Guess that means I can't wink at the cute boys anymore... at least not for a while. That could last weeks or months. The risks/complications for the bone drilling part are hearing loss (rare), ringing sound (rare), dizziness (rare), facial weakness (probable), change of taste (unlikely).

I'm still scheduled for surgery on 2/10/10 which means radiation would start mid-March. My next appointments are 1/19/10 so that'll probably be my next update. Praying for another richly blessed year in 2010!

Assurance

I just got off the phone with "my" doctor, Dr. Alford. Even though he can't perform the surgery, I needed him to assure me that I'm doing the right thing. Although I don't think he thinks highly of the facility (they're a little full of themselves), he did assure me that I'm in good hands and that the course of action is appropriate. He re-iterated that each surgery poses a greater risk to damaging my facial nerve. I had been very fortunate in the past to have had no facial paralysis.

A couple of things I didn't know... the surgery should last 6-8 hours and we discussed risks of radiation. From what I can tell, the biggest problem with RT will be the commute from home to Houston... daily... for 6 weeks!!

Also, he said that the new doctor will not provide any follow-ups which is fine with me -- I get to go back to Dr. Alford.

Next appointment is December 30.

First appointment

Not sure if this really counts as a "first appointment" (December 17, 2009) since it's my third opinion. But, it was the first appointment with the third (and final?) doctor.

Thursday I went to see Dr. Randy Weber at M.D. Anderson in Houston, TX. I've known for nearly 2 years that I've had a third recurrence of a pleomorphic adenoma (right side). My first parotidectomy was in September 1998; second in December 2004. The surgeon that performed the first 2 surgeries (Dr. Gene Alford) had an accident in 2007 and is no longer able to perform such a complicated surgery. He referred me to Dr. Don Donovan. Both doctors advised me to avoid radiation and put off surgery a little longer. My tumor is obviously growing and surgery can't be put off much longer. I do not want to have a 4th surgery so I wanted to consider radiation. If it causes a malignancy down the road, I'll deal with that later. So, that's what took me to MD Anderson.

I knew going into the appointment that I had a "complicated" issue. The doctors kept repeating that to me during this appointment. (Did I mention that I had to wait 2 1/2 hours to actually see the doctor?) I didn't realize the gravity of the situation going into it. Dr. Weber strongly advised surgery and 6 weeks of daily radiation. They are making no promises to preserve function of my facial nerve. I knew that was a risk, but they didn't give me much hope. It sounds like the best scenario is temporary paralysis and not permanent. They also said that the nodules are in my skin and the skin would need to be removed. A plastic surgeon will either pull the skin tight on my face (a facelift at 36!) or do a skin graft from my arm, chest or leg. He'll also do a nerve graft (from my leg) if they damage a branch of the facial nerve.

I have several appointments coming up with Radiology, Plastics, Ear specialist, Audiology consult, and dental. They originally scheduled surgery for one week after my daughter's jaw surgery. I thought that would work, but my pre-op appointments are scheduled for the day before & day of her surgery. Obviously that won't work so I've sent an email requesting re-scheduled dates. Hopefully I'll hear back on Monday.

Several months ago I found a someone's blog chronicling their experience with a pleomorphic adenoma (surgeries & radiation). It was helpful to have an idea of what to expect. Maybe someone will stumble across this and find it helpful. I'll try to keep up with what's going on throughout the journey. I can't say that I'm looking forward to it, but I'm in a better place mentally today than I was on Thursday. The idea of losing function in half of my face is nauseating to say the least. But, I have to believe in a God that has a plan for me and will get me through this just like He has for everything else.