Follow-ups with Doctors

I won't go into the details of my extensive wait for Dr. Weber - we'll just say it was "as usual." He said everything looked good, as in, as it should look. He wants me to come back again in 3 months for an MRI to make sure he "got it all." He better have gotten it all!!! That'll be the baseline, then I'll get an MRI every 6 months for a couple of years and then yearly. I asked about my stuffy ear and bleeding nose and he said both were normal with radiation. It should subside in a few weeks. He wants me to see Gidley in a couple of weeks for my ear (big surprise) and recommended Ocean Nasal Spray for my nose. We also talked about my bottom lip - he still thinks it could come back. My facial weakness isn't completely gone, but the lip is the weakest.

Had a good visit with Dr. Skoracki. When he walked in, he immediately had a pained look on his face when he saw mine. It makes me smile when someone has an honest reaction. (Except for the lady at the movies that could not stop staring at me. I wanted to ask her if she'd like to take a picture!) He tried to take a quick look and tell me to come back in 4 months. I told him to park it, I have a list of questions! Here's what I found out:
Revision surgery will be no sooner than 6 months post-rad. Follow-up appt in 4 mos. I could push out surgery longer because the effects of radiation could take up to two years. (The tissue could continue to shrink that long.) It may take multiple surgeries to take out the thigh flap a little at a time. We'll play this one by ear. He can also revise the pooch on the leg scar if I want him to. In the meantime, I can use whatever make-up, cover up, spray-on tan to conceal it as long as I don't find it irritating to my skin. (I'll wait for the skin to completely heal first, 3-4 weeks.) The hair on my face may still fall out, but if not, laser removal is an option (as is plucking or depilatory creams).
Last night I noticed that my ears are crooked (maybe they were before surgery, I just never looked). He did agree that the right ear sticks out a little more. Didn't sound like there was much he could do about it. yippee.

Here's the really swell news... according to Dr. Skoracki, the lost hair on my head is gone for good. The radiation completely destroys the hair follicles. BUT, he can recommend a great doctor that might be able to perform a hair transplant. O...M...G!!!

Notes on side effects

In my earlier post today, I forgot to mention my last visit at the radiation doctor's office. I don't get anything useful from the doctor, but Nurse Gary was full of information. He gave me a list of side effects and the expected time it could take for them to subside once treatments are over.
Skin - 3-4 weeks
Thick saliva - 1-5 months
dry mouth - Years (I'm hoping that this is a bit off since I've been minus one salivary gland for 12 years and have already compensated for it.)
mouth sores (if I had any) - 1-3 months
fatigue - 1-5 months (this is the one I'm most concerned about)
taste - 1-4 months. Up to 1 year. After one year I probably won't get any more back.
hair loss - could be permanent. We'll have to wait & see.

I'm working on a new list of questions for this week's appointment.

LAST WEEK!!!!

5 more treatments. I can't believe it. I'll be home in 4 days! I thought I was finished with the new side effects. Silly me. 2 more: my skin is starting to breakdown and my right ear is plugged. The breakdown of skin means the skin is so weak that it starts to ooze and crust over (remember, you CHOSE to read this!). Sometimes it bleeds. Pretty nasty. You should see my pillow! As for my ear -- this is a very new side effect, as in, it started last night. You may recall that I've had concerns about this ear ever since surgery. Well, last night it was so plugged, I couldn't hear anything out of that ear. Ten days ago I had follow-up hearing test and was told that I had slight hearing loss in BOTH ears. Swell. I'm supposed to go back at a later date for another follow-up. The audiologist didn't offer any details, just promptly escorted me out of his office. I should've asked questions, but wasn't prepared for that and just left.

Tomorrow I have appointments with the head & neck surgeon (Weber) and plastics (Skoracki). Maybe Weber can shed some light on the ear problem. He'll probably tell me that I need to see Gidley, but he is an otolaryngologist afterall so surely he can offer some guidance. I'm anxious to hear (with my one good ear) what Skoracki has to say about putting my face back together. It is such a mess now. Of course, there's quite a bit of healing to do from the radiation burns, but after that, he'll still have plenty to do. I'm hoping to get rid of some, if not all, the thigh skin from my face. And as long as he's tightening things up on the right side, he might as well make it even on the left. Right?!

I'll try to post an update again this week before I GO HOME!

A picture...

is worth a thousand words.

Excerpts

I just re-read a few posts from the blog I found awhile back from a guy that went through the same treatments I'm going through. Here are a few excerpts:
"Note to those reading, I'm in no way depressed, moody or otherwise down. Just the opposite. I went into this thinking doom and gloom and I'm happy to report I'm still feeling fine..... No sores on my skin or in my mouth yet.... All in all, these radiation treatments are not as bad as I had anticipated.... So I'm getting off easy. The doctor told me my skin would not get any worse. I'm simply a little red, lost a little hair behind my ear, my beard stopped growing, and my taste is gone.... In terms of side effects, I would rate them as follows:
#1 Lost Taste. I've only lost 3 lbs since starting treatments, but eating is terribe. Blah!
#2 Stuffed ear. It's also draining fluid but seems to be getting better.
#3 Radiation burn. It doesn't bother me at all. Just looks like a bad sunburn or bruise."

This guy sucks! And he's right -- he got off EASY!! OK, I feel better now. :-P

I think I just got the last expected side effect -- thick saliva. Just as nasty as it sounds and we'll leave it at that. Now, if we can just maintain what we've got and not get any worse, we'll be just fine for the next 13 treatments. Yep, that's right, I'm OVER halfway done. To compare to the above side effects, I would somewhat agree on #1. My tongue is fried. Little taste left, but I have a few sores to accompany that. Makes talking & eating a challenge, but since those are two of my favorite things to do, I must overcome!

I keep reminding myself of the end goal -- to zap those tumor cells once & for all. No more parotidectomies for me! I was wondering what type of radiation the above-mentioned fella had. I don't guess I'll ever know the answer to that, but I can tell you about mine. I don't know at all what this means, but here's an excerpt from my doctor's note:
"...we have elected to treat her with intensity-modulated therapy so that we can get to the parapharyngeal space and cover the volume at risk. The plan is to treat her to 60 Gy in 30 fractions.
BASIC TREATMENT PLAN: The patient will be treated with a 7-field intensity modulated treatment plan that will compass the parotid bed and upper right neck. The dose will be 60 Gy in 30 fractions; 6 MV photon and multileaf collimated shielding will be used. Additional margins will receive 54 Gy.

SPECIAL TREATMENT PROCEDURES: The patient is being treated with intensity-modulated therapy to the head and neck requiring additional treatment planning time to delineate multiple target volumes and avoidance of structures."

There you have it, folks!