December 17, 2009, I had my first appointment in this journey. What a year! I could complain about it, but I'd rather look at where I've been and how far I've come this year. I can say with absolute certainty that I'm in a much better place mentally & physically than I was a year ago. I'm not sure I was aware at the time what a strain this put on me mentally. And, physically, I've obviously been put through the wringer, but, overall, am stronger. There are some scars that I'll have with me forever, but they are reminders of survival!
OK, back to the little details of this journey. I've had a couple of appointments lately that haven't been mentioned yet. Post-op appointment was on November 9. Dr. Skoracki was quite pleased with his work. I guess I'd have to agree. I've had some very nice comments since then. The best one was from a friend in Sunday School. She said, "you look like you." Dr. S said there was possibly more to do and I should come back in 6 months. I said, "how 'bout 12?" He likes the way I think. As of now, we're not planning any surgeries in 2011 so I'll go back to see him in January 2012. Yea! By then I'm not sure if I'll want to take advantage of the opportunity to get another nip & tuck or if I will be quite satifsfied with what I have and leave well enough alone.
December 8, I went for another hearing test. Apparently that's not doing better. In fact, a little worse in the right ear. Dr. Gidley 'hoovered' out my right ear again. Said that will need to be done for about 2 years. My ear no longer has a 'self-cleaning' feature. He asked if I was bothered by the hearing loss. I wasn't sure how to answer so he suggested 'not enough to do anything about it?' Exactly. I didn't ask what could be done. I'm guessing another surgery or hearing aids and I'm not thrilled with either option. I'll go see him again in the summer -- will try to synchronize with Dr. Weber appts then. Speaking of, I have an MRI & appt with Dr. W in about a month.
Monday, December 20, 2010
Sunday, October 31, 2010
Final surgery?
I went to my pre-op appointments on Thursday, October 28. Anesthesia was first. It was pretty uneventful. The most noteable thing at this appt was finding out that I was tentatively scheduled for 7:30 AM. Whoo Hoo! Of course, that very first appointment was running late so I was an hour late for my appointment with Dr. Skoracki.
He gives me such grief! I had a long list of questions. One was about when I could work out again. Silly me, I mentioned having a trainer and he got a big kick out of that. I also asked him about doing something about the extra chin I've had since birth! He said "I can't believe I'm letting you talk me into this!" and agreed a little lipo would do the trick. Hey -- let's make the most of this situation! I'll go back in 1 1/2 - 2 weeks for follow up. The incisions should heal nicely even with post-radiation skin. No much he can do about the chunk missing from my ear and the lingering pain is due to poor blood supply. I should give that another year or two and if it still gives me grief I can try a hyperbaric oxygen chamber. Uh, I think it's feeling better already!
The skin flap will be left alone this time -- we can re-visit that in about 6 months. Another surgery?? I think I might just learn to leave well-enough alone.
Surgery day:
Arrived at the hospital at 6 AM. I went back around 6:30 and the P.A. stopped by to say they were ready so things moved rather quickly. I think I had my "margarita" by 7AM. Seems like I heard they were finished by 9. We were out of there by 11 and back at Pop's house just after 1. My chief complaint when we left was dry mouth. And I mean DRY. I couldn't swallow anything without water to wash it down. The other pain in the neck was the pain in my neck from the drain. I'm supposed to leave that in 5-7 days even it there's nothing draining. I think I can make until Tuesday. Dr. S did say he was able to get some of the skin flap and he did lipo on my face/cheek, neck & right thigh. It's all a little sore -- I can't imagine having lipo done in large quantities. Ow! Post-op instructions are to keep the wounds covered and wash & apply Bactroban 2x daily; no strenuous activities for a week.
As far as surgeries go, this one was pretty much a breeze.
He gives me such grief! I had a long list of questions. One was about when I could work out again. Silly me, I mentioned having a trainer and he got a big kick out of that. I also asked him about doing something about the extra chin I've had since birth! He said "I can't believe I'm letting you talk me into this!" and agreed a little lipo would do the trick. Hey -- let's make the most of this situation! I'll go back in 1 1/2 - 2 weeks for follow up. The incisions should heal nicely even with post-radiation skin. No much he can do about the chunk missing from my ear and the lingering pain is due to poor blood supply. I should give that another year or two and if it still gives me grief I can try a hyperbaric oxygen chamber. Uh, I think it's feeling better already!
The skin flap will be left alone this time -- we can re-visit that in about 6 months. Another surgery?? I think I might just learn to leave well-enough alone.
Surgery day:
Arrived at the hospital at 6 AM. I went back around 6:30 and the P.A. stopped by to say they were ready so things moved rather quickly. I think I had my "margarita" by 7AM. Seems like I heard they were finished by 9. We were out of there by 11 and back at Pop's house just after 1. My chief complaint when we left was dry mouth. And I mean DRY. I couldn't swallow anything without water to wash it down. The other pain in the neck was the pain in my neck from the drain. I'm supposed to leave that in 5-7 days even it there's nothing draining. I think I can make until Tuesday. Dr. S did say he was able to get some of the skin flap and he did lipo on my face/cheek, neck & right thigh. It's all a little sore -- I can't imagine having lipo done in large quantities. Ow! Post-op instructions are to keep the wounds covered and wash & apply Bactroban 2x daily; no strenuous activities for a week.
As far as surgeries go, this one was pretty much a breeze.
Monday, October 18, 2010
Upcoming surgery
My next surgery is just around the corner. I am so ready for this! It's scheduled for Friday, October 29. Just found out today that I'm tentatively scheduled for 4:45PM. Are they kidding me? If they think I'm going to go an entire day without eating, they are sadly mistaken! I left a message for the nurse to request a morning start time.
I'm going to have the excess tissue from my neck removed and probably some of the thigh flap. I'm calling it a face-lift! I think they are also going to clean up the scar on my thigh -- the top part is bulging a bit so apparently a little lipo will take care of that. The whole thing is scheduled to take about 2 hours, then I'll spend a little time in recovery before they kick me out the door. Not sure how long I'll be down & out... hopefully, just a day or two.
Since my last post, my recovery has gone remarkably well. I have lots more energy and most of my tastebuds have come back to life. In fact, I even started working out with a trainer. That's probably been the most helpful in many aspects. Now, if I can just keep from getting sick before next Friday... croup is making its way around my house.
Will post an update when the anesthesia wears off!
I'm going to have the excess tissue from my neck removed and probably some of the thigh flap. I'm calling it a face-lift! I think they are also going to clean up the scar on my thigh -- the top part is bulging a bit so apparently a little lipo will take care of that. The whole thing is scheduled to take about 2 hours, then I'll spend a little time in recovery before they kick me out the door. Not sure how long I'll be down & out... hopefully, just a day or two.
Since my last post, my recovery has gone remarkably well. I have lots more energy and most of my tastebuds have come back to life. In fact, I even started working out with a trainer. That's probably been the most helpful in many aspects. Now, if I can just keep from getting sick before next Friday... croup is making its way around my house.
Will post an update when the anesthesia wears off!
Friday, July 23, 2010
Follow-up appts
July 21-22, 2010
I had 7 appointments over the span of 2 days this week. Before I re-cap all those, I want to make a note that my hair started growing back last week (7/12). It's in a few small places, but I'll take it!
#1 - MRI
Pretty uneventful. I'm rather used to the procedure. Only this time I did start to get stiff by the end and it was hurting the back of my head. Fortunately, that was at the very end so I didn't have to hit the panic button!
#2 - Dr. Gidley
This is the ear doctor. I've downgraded from "crap" in my ear to only "crud." He had his resident suction it out again (he made me a bit nervous). (On a side note: there's apparently still some fluid in there because this morning it was all dried up again just inside my ear. Lovely.) Anyway, it was nice to have it cleaned out. Gidley did say that my eardrum looked like one that had been radiated. Whatever that means. I go back to see him in November.
#3 - Audiology test
I passed! OK, you don't really pass or fail, but I did have improvement from my last test. The audiologist said it was almost back to my original levels. Go back there too in November.
#4 - Dr. Chambers (which ended up being Dr. Hofstede) - Start of Day 2
Didn't take long to get behind schedule. 3 residents came in to assess my situation. I gave the 20-second re-cap of my history. They measured how wide I could open my mouth. 36 mm. We talked about what fluoride to use and decided that I would follow-up with my home dentist. (Dr. Burk gave me Previ-dent to start with so I'll probably continue with that.) I asked if I would need this forever, if the pH in my mouth would always be "off." They said that I could test the pH later, but without a starting point it really doesn't matter. Last word(s) on the subject: "Fluoride therapy is lifelong." At some point in all this Dr. Hofstede did make an appearance. She said that I need to brush, floss, & fluoride every day for life. They also said I should keep the fluoride trays in my mouth for 10 minutes a day -- I had been doing it for 1 minute/day. Oops. And I need to continue stretching exercises until I can maintain 40+mm without stretching. No more follow-ups other than regular dental cleanings!
#5 - Dr. Skoracki
He was pleased with his work. He said the most dramatic changes happen in the 6 months following radiation and that he would like to do a revision surgery to take out excess tissue. He'll also pull my facial skin tighter so that he can remove some of the flap. (Yes, I asked if he could give me a little "lift" on the left side, but he said it wasn't necessary!) So, that puts a surgery at the end of October. It'll only take about 2 hours and is out-patient. And he'll probably do a bit of lipo on my upper thigh (don't be jealous!)... the scar puckers a little at the top and apparently a smidge of lipo can take care of that. We also talked about my lopsided ear. He said that it might be possible to fix it... another time. Apparently the radiation zapped the blood flow to my ear so it may not heal very well. We just have to watch this one. I just might have to learn to live w/ lopsided ears.
#6 - Dr. Garden
Radiation Oncology. My least favorite doctor, but I do like his staff. I got to talk to Monique and she answered most of my questions. Of course, I forgot to ask about taste buds. I still can't taste some sweets, particularly dairy, but everything else is acceptable. One of the first things she told me was that the MRI came back NEGATIVE -- translation: NO TUMORS!!
We talked about jaw & neck stretches. I'll need to continue those (now I don't remember for how long), but Monique said that I should expect some loss in range of motion. (I can turn my head from side-to-side, just not as far as I used to.) As I mentioned in the very beginning, my hair has started to grow back. She said my hair could come back a little different (temporarily?) and whatever starts to grow after a year is all I will get. I'm only 3 months in so there's lots of hope! Dr. Garden came in, poked around a bit, looked inside my mouth and said everything looked good. Since I'm being followed by a couple other doctors, I got released from him too. Yea!
#7 - Dr. Weber
He, too, was very pleased with his work. He is very impressed with the nerve function I have. There is no noticeable paralysis or weakness. Yea! And, he confirmed NO TUMORS! He said that if they come back, he just might send me back to Dr. Alford. That would be fine with me, but I don't think he wants to do this operation again either. I'm feeling so unloved. :-( Oh alright, it's unanimous -- no one wants to see these tumors again!! Weber's PA, Shawn Terry, spent quite a bit of time with me. He advised me to get a thyroid test with my GP because the radiation could have affected it. (NOTE: I had this test done on July 30. It was a little low -- borderline acceptable. I'll test it again in 3 months. If it's lower, then I'll go on medication.)
I think that's it for now. See you again in 3 months.
I had 7 appointments over the span of 2 days this week. Before I re-cap all those, I want to make a note that my hair started growing back last week (7/12). It's in a few small places, but I'll take it!
#1 - MRI
Pretty uneventful. I'm rather used to the procedure. Only this time I did start to get stiff by the end and it was hurting the back of my head. Fortunately, that was at the very end so I didn't have to hit the panic button!
#2 - Dr. Gidley
This is the ear doctor. I've downgraded from "crap" in my ear to only "crud." He had his resident suction it out again (he made me a bit nervous). (On a side note: there's apparently still some fluid in there because this morning it was all dried up again just inside my ear. Lovely.) Anyway, it was nice to have it cleaned out. Gidley did say that my eardrum looked like one that had been radiated. Whatever that means. I go back to see him in November.
#3 - Audiology test
I passed! OK, you don't really pass or fail, but I did have improvement from my last test. The audiologist said it was almost back to my original levels. Go back there too in November.
#4 - Dr. Chambers (which ended up being Dr. Hofstede) - Start of Day 2
Didn't take long to get behind schedule. 3 residents came in to assess my situation. I gave the 20-second re-cap of my history. They measured how wide I could open my mouth. 36 mm. We talked about what fluoride to use and decided that I would follow-up with my home dentist. (Dr. Burk gave me Previ-dent to start with so I'll probably continue with that.) I asked if I would need this forever, if the pH in my mouth would always be "off." They said that I could test the pH later, but without a starting point it really doesn't matter. Last word(s) on the subject: "Fluoride therapy is lifelong." At some point in all this Dr. Hofstede did make an appearance. She said that I need to brush, floss, & fluoride every day for life. They also said I should keep the fluoride trays in my mouth for 10 minutes a day -- I had been doing it for 1 minute/day. Oops. And I need to continue stretching exercises until I can maintain 40+mm without stretching. No more follow-ups other than regular dental cleanings!
#5 - Dr. Skoracki
He was pleased with his work. He said the most dramatic changes happen in the 6 months following radiation and that he would like to do a revision surgery to take out excess tissue. He'll also pull my facial skin tighter so that he can remove some of the flap. (Yes, I asked if he could give me a little "lift" on the left side, but he said it wasn't necessary!) So, that puts a surgery at the end of October. It'll only take about 2 hours and is out-patient. And he'll probably do a bit of lipo on my upper thigh (don't be jealous!)... the scar puckers a little at the top and apparently a smidge of lipo can take care of that. We also talked about my lopsided ear. He said that it might be possible to fix it... another time. Apparently the radiation zapped the blood flow to my ear so it may not heal very well. We just have to watch this one. I just might have to learn to live w/ lopsided ears.
#6 - Dr. Garden
Radiation Oncology. My least favorite doctor, but I do like his staff. I got to talk to Monique and she answered most of my questions. Of course, I forgot to ask about taste buds. I still can't taste some sweets, particularly dairy, but everything else is acceptable. One of the first things she told me was that the MRI came back NEGATIVE -- translation: NO TUMORS!!
We talked about jaw & neck stretches. I'll need to continue those (now I don't remember for how long), but Monique said that I should expect some loss in range of motion. (I can turn my head from side-to-side, just not as far as I used to.) As I mentioned in the very beginning, my hair has started to grow back. She said my hair could come back a little different (temporarily?) and whatever starts to grow after a year is all I will get. I'm only 3 months in so there's lots of hope! Dr. Garden came in, poked around a bit, looked inside my mouth and said everything looked good. Since I'm being followed by a couple other doctors, I got released from him too. Yea!
#7 - Dr. Weber
He, too, was very pleased with his work. He is very impressed with the nerve function I have. There is no noticeable paralysis or weakness. Yea! And, he confirmed NO TUMORS! He said that if they come back, he just might send me back to Dr. Alford. That would be fine with me, but I don't think he wants to do this operation again either. I'm feeling so unloved. :-( Oh alright, it's unanimous -- no one wants to see these tumors again!! Weber's PA, Shawn Terry, spent quite a bit of time with me. He advised me to get a thyroid test with my GP because the radiation could have affected it. (NOTE: I had this test done on July 30. It was a little low -- borderline acceptable. I'll test it again in 3 months. If it's lower, then I'll go on medication.)
I think that's it for now. See you again in 3 months.
Wednesday, May 19, 2010
Recovery
The burns on my head/neck are remarkably better. Still not completely healed, but so much better. Maybe another week. My ear, as I mentioned before, is crispy-fried. In fact, I noticed recently that part of it is actually burned off. Once it is completely healed, I don't think it will be all that noticeable, but, yep, it's definitely burned off in 2 places.
My tastebuds are still on vacation. Or are they in recovery? Either way, they are not working! I think I'm getting some taste back or maybe it's just my mind willing myself to believe I can taste things. The best thing I've had over the past several weeks was nachos from Freebirds. I'm pretty sure I'll have to go there again very soon. Seems that foods with a little more flavor/spice are more palatable. Unfortunately, my taste for sugar has definitely not returned yet and I miss it terribly!
I still have dry mouth and somewhat thick saliva. As long as I have a glass of water nearby those don't bother me too much (just a little!).
I went to the ear doctor recently and had a hearing test. I still have hearing loss in my right ear. After the test, I went to see the ear doc for the first time since surgery. He said my left ear was fine, but my right ear was "full of crap." He pulled out the Hoover and sucked it clean. I can hear! It's a miracle! I do have fluid in my ear and he's hoping it will clear up on it's own. If not, I'll have to have tubes put in. Seriously. Maybe my daughter & I can get a two-for-one deal. I go back in July to see ALL the doctors (5) and get an MRI that will confirm they got it all.
Guess what - there's something new! About half of my eyebrow and at least half my eye lashes have fallen out. Gotta love radiation! Oh they better come back! Guess I'll have to put the mascara back in the drawer. Oh wait, I don't wear make-up.
Oh, I almost forgot. My leg is giving me grief. It has felt bruised on the side of my thigh (from the skin flap) for at least 2 weeks now. I finally called the doctor on Monday and am still waiting to hear back. I got a call from the nurse yesterday, but she hadn't actually talked to the doc yet. Maybe tomorrow. I just want to know if it's something that is normal and will work itself out (or something I just have to live with) or if I should be concerned.
My tastebuds are still on vacation. Or are they in recovery? Either way, they are not working! I think I'm getting some taste back or maybe it's just my mind willing myself to believe I can taste things. The best thing I've had over the past several weeks was nachos from Freebirds. I'm pretty sure I'll have to go there again very soon. Seems that foods with a little more flavor/spice are more palatable. Unfortunately, my taste for sugar has definitely not returned yet and I miss it terribly!
I still have dry mouth and somewhat thick saliva. As long as I have a glass of water nearby those don't bother me too much (just a little!).
I went to the ear doctor recently and had a hearing test. I still have hearing loss in my right ear. After the test, I went to see the ear doc for the first time since surgery. He said my left ear was fine, but my right ear was "full of crap." He pulled out the Hoover and sucked it clean. I can hear! It's a miracle! I do have fluid in my ear and he's hoping it will clear up on it's own. If not, I'll have to have tubes put in. Seriously. Maybe my daughter & I can get a two-for-one deal. I go back in July to see ALL the doctors (5) and get an MRI that will confirm they got it all.
Guess what - there's something new! About half of my eyebrow and at least half my eye lashes have fallen out. Gotta love radiation! Oh they better come back! Guess I'll have to put the mascara back in the drawer. Oh wait, I don't wear make-up.
Oh, I almost forgot. My leg is giving me grief. It has felt bruised on the side of my thigh (from the skin flap) for at least 2 weeks now. I finally called the doctor on Monday and am still waiting to hear back. I got a call from the nurse yesterday, but she hadn't actually talked to the doc yet. Maybe tomorrow. I just want to know if it's something that is normal and will work itself out (or something I just have to live with) or if I should be concerned.
Saturday, May 1, 2010
Bottomed out
It's been a full week since my last radiation treatment. Yea! As expected (without fully knowing what to expect), I "bottomed out" this week. Yesterday, for the first time, it started to look like the burns on my neck were healing. Most of the week, I noticed more blistering (2nd degree burn) and developed mouth sores. I kept up with the Dilaudid most of the time, with Advil sprinkled in here & there. I haven't taken Dilaudid in about 24 hours, I think, and am hoping to stick with Advil here on out. I do have some inner & outer ear pain. The outer ear pain is obvious -- looks like my ear is burnt to a crisp and just might fall off. I'm anxious to see the ear doc and have my hearing tested again on May 12.
I expect the next few weeks to continue with good days and bad days with the bad days becoming fewer and fewer.
Here's an example of what bottomed out looks like:
Tuesday, April 20, 2010
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!!!
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!!!
Monday, April 19, 2010
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.
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!
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!
Monday, April 12, 2010
Tuesday, April 6, 2010
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!
"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!
Tuesday, March 30, 2010
They keep coming
I think I'm just about to run out of possible new side effects. For those with a cruel sense of humor, you'll get a kick out of this one. I was told that I could lose my hair in the treatment area. Sure enough, the hair behind my ear is falling out... in small wads. Since it's behind my ear, no biggie. But... the skin flap, my new skin, from my thigh is now growing hair. O--M--G!!! I'm going to count on radiation zapping that hair too. And, no, it's really not noticeable unless you are looking up close & personal.
This morning I escaped a wave of nausea, but it was replaced with very a painful sore on my tongue (way in the back, on the right side at the base). Made swallowing a HUGE challenge. Not good if they want me to continue eating & drinking for the next 4 weeks. Well, I took a couple of Advil and thankfully, that managed the pain enough for me to get down my lunch. Whew! It's several hours later and it's still tolerable. I did take a Tylenol to be on the safe side.
(BTW, if you are reading this, please sign the comments -- I'm just curious.)
This morning I escaped a wave of nausea, but it was replaced with very a painful sore on my tongue (way in the back, on the right side at the base). Made swallowing a HUGE challenge. Not good if they want me to continue eating & drinking for the next 4 weeks. Well, I took a couple of Advil and thankfully, that managed the pain enough for me to get down my lunch. Whew! It's several hours later and it's still tolerable. I did take a Tylenol to be on the safe side.
(BTW, if you are reading this, please sign the comments -- I'm just curious.)
Monday, March 29, 2010
Week 3
Today starts Week 3. My first treatment of the week will be in about 20 minutes so I have time for a quick update. I had a great weekend at home with my family. That is, once I ditched my new med which I now know is Compazine. Remember that name, folks, and avoid it like the plague! That stuff was awful. I described it as having the creepy crawlies or heeby jeebies all over. I couldn't sit still. When I read the drug fact sheet, it described the usual side effects and then said that if any of these unusual side effects occur, call your doctor immediately: restlessness/agitation. Bingo! I never took another one. Fortunately I had some phenergan at home that was left over from a recent stomach bug. Phenergan is my new best friend and I had that Rx re-filled! Once that chief complaint was under control, the rest of the weekend was smooth sailing.
I did have a couple of other new side effects pop up this weekend. I now have sores in my mouth -- feels like a burn you get when you eat something too hot. And my taste buds are mostly shot. Things just aren't tasting the same. I'd say it's leaning more toward 'no taste' than 'bad taste' which I'm thinking is a good thing. Maybe now is the time to learn to eat tomatoes. NOT!
I did have a couple of other new side effects pop up this weekend. I now have sores in my mouth -- feels like a burn you get when you eat something too hot. And my taste buds are mostly shot. Things just aren't tasting the same. I'd say it's leaning more toward 'no taste' than 'bad taste' which I'm thinking is a good thing. Maybe now is the time to learn to eat tomatoes. NOT!
Thursday, March 25, 2010
Nutrition & Acupuncture
Yesterday I sat down with a nutritionist. I really enjoyed my visit with her. We reviewed what I currently eat and she seemed happy with it. She let me know how many calories and how much fluid I should be consuming daily. She also gave me a few ideas on how to pack in a few extra calories when I don't feel like eating. I never thought there would come a day when I didn't want to eat, but I see it getting close. The nausea is really becoming bothersome so today I'm going to hit it with a double-shot. I got a prescription (can't remember the name, but it's not zofran or phenergan) and I had acupunture. The acupuncturist also sent me home with seeds taped to my ear so that I can press them on some pressure points. It's supposed to help with nausea, dry mouth & some unrelated back pain. I've got one hardcore acupuncturist. I had always heard that it didn't hurt, but this lady wants to make sure you feel something, otherwise, apparently, it's not working/hitting the right spot. My motto is "whatever works!" Now I'm off to CVS to pick up my prescription. Radiation comes later this afternoon. Did I mention my white skin is starting to turn a lovely shade of pink?
Wednesday, March 24, 2010
7 down
I just finished treatment #7 with #8 coming this afternoon. Yes, I'm doubling up in one day so that I don't have my final treatment on a Monday (which would mean another trip to Houston). So far, the side effects have been mild nausea and as of yesterday, a bit of dry mouth.
This afternoon I have an appointment with the nutritionist. I'll be interested to hear what she has to say. I could have used a nutritionist long before now. Maybe she'll help me set up some good habits for life. Then I would just have to convince my family to go along with it!
This afternoon I have an appointment with the nutritionist. I'll be interested to hear what she has to say. I could have used a nutritionist long before now. Maybe she'll help me set up some good habits for life. Then I would just have to convince my family to go along with it!
Friday, March 19, 2010
Eyes Open
4 down, 26 to go.
I'm going to attempt to add photos this time. Here are a couple of pics of the almighty machine.
I'm a dork. I mentioned the bright light from my first treatment. Well, today, I kept my eyes open for the first few minutes. The "bright light" was just the overhead lights. The machine is directly above my head when I lay down. When things get rolling (after I close my eyes), the machine moves to the side and the overhead lights are shining down on me. Then the machine moves some more and blocks the light. Oh well, I can still pretend I'm at the beach!
So, I finished my first week. Not too bad. The only side effect (which could be completely unrelated) is mild nausea. I need to get started on the flouride treatments and baking soda rinse. I'm doing the mouth exercises although I found out yesterday that the jaw & neck exercises are really for AFTER treatments stop because that's when the scar tissue will start to build up. The doctor said it was a good idea to get started before the treatments end... I think to get in the habit.
I'm going to attempt to add photos this time. Here are a couple of pics of the almighty machine.
Now for the mask that has been molded to fit my face. This holds me in place so that I'm receiving radiation in the exact same place each time.
Lastly, me in the mask. Kinda looks like a horror film. Long lost cousin of Jason?! Yes, I can breathe, no I cannot move from the shoulders up!
Wednesday, March 17, 2010
1 down, 29 to go
I thought my first treatment was going to be Monday, but that turned out to be a "dry run." I was strapped down and put in the proper position, but then they just took an x-ray. The doctor wants to see if everything is just right before shooting those first beams. Guess it was all in order because my first official treatment was Tuesday. I went in, got my towel to cover up with, laid on the table, was handed my stent (it stays there for safe keeping), popped that sucker in and closed my eyes. They tape the bolus to my head and put the mold over my head and attach it to the table. The machine moved around a few times and zapped me in different places. I counted 6 (maybe 7) long beeps. That'll help me count down each treatment. There was also a bright light at one point so I imagined myself on the beach (whatever works)! When the light moved and it wasn't so bright I just thought the sun moved behind a cloud. ;-) I was in and out of there in 30 minutes. The lady I've seen in the waiting room the past 2 days has 8 more treatments. Her neck was really red, looked like a very bad sunburn. I didn't notice any blisters though.
Lastly, I want to send out a couple of shout-outs. First to S&K for the wonderful accomodations. WOW! Thank you so much for your generosity. Secondly, to my fab sis and her family. Thanks for everything!
Lastly, I want to send out a couple of shout-outs. First to S&K for the wonderful accomodations. WOW! Thank you so much for your generosity. Secondly, to my fab sis and her family. Thanks for everything!
Thursday, March 11, 2010
Radiation class
Sometimes you just have to laugh. Radiation is just a concentrated x-ray, right? We've all had x-rays, rights? No biggie. Not exactly!
My posts are never that organized so this will be no different. Try to keep up!
Good news: Valet parking is free during radiation treatments, I am required to see the doctor every week so that I can ask any questions and review any/all side effects and how to manage them. I can also "drop-in" anytime if I'm having issues. That's about all I can come up with on the good news side... other than the "it could be worse" point of view.
I should be fine the first 2 weeks and then the side effects start kicking in around week 3 and get progressively worse throughout the remaining treatments.
Side effects:
The skin in the treatment area may become red and itchy and may blister/peel (similar to a bad sunburn).
I'll feel tired (naps are nothing new to me).
Could get a sore throat making it difficult to swallow, therefore, difficult to eat & drink. Those are 2 VERY important things. If I start to lose weight, they'll put in a feeding tube. No thanks!
Change of taste, nausea & loss of appetite.
Hair loss in the treatment area. (My hair was already shaved a little bit behind my ear so I'm not going to worry about that one.)
Mouth sores.
Saliva changes (as in thick & sticky). The nurse said I would want to spit it out constantly, including in the middle of the night. He recommended sleeping sitting up about 45 degrees so I don't gag on it. (I think this is where I start to laugh. Really????)
If the mouth sores, sore throat or anything else cause too much pain, they'll put me on pain meds. If that happens, then we add a new side effect of constipation. I'm scheduled for a "Bowel Management Class." Really???? Laughing again.
There's also a list of things to avoid. Not that I'm a big drinker, but I'm really bummed that I can't have alcohol during the next 6 weeks. (We want what we can't have!) Also, no carbonated beverages, citrus juice, sharp-edged foods (chips, pretzels), or highly seasoned/spicy foods.
There are things I'm supposed to do to treat the side effects: (They actually gave me a checklist). These are all supposed to start on day 1.
Aquaphor ointment for skin burn - 3-4x daily
Baking soda mouth rinse - 4-6x daily (continue for 6 months after treatments stop)
Fluoride - 1x daily (continue forever)
Jaw, Neck & Throat exercises (6 exercises) - at least 3x daily (however, my plastic surgeon has not cleared me yet for neck exercises because I need more time for the surgical site to heal.) (Also continue these for several months after treatments)
Brush with Biotene or Sensodyne toothpaste.
That pretty much covers what we discussed in class. I then went to an exam room to wait on the team of doctors. They all came in -- about 6 people. One of the other doctors looked at my neck and they all left. Apparently they went somewhere else to review films and my proposed treatment plan and they all agreed. I got my radiation schedule, signed the consent form and left. My schedule is fine with me except for Fridays. All my appointments are late afternoon/evening. I need early appointments on Friday so I can hit the road and see my family! When I start on Monday, I'll see what I can do to change that.
(Side note: When I got home -- actually not even home, just stopped to pick up the kids -- I got a call from MDA that they had me scheduled for a hearing test on March 11. That would be today. I said "I don't think so!" I'm going to be there for the next 6 weeks! How 'bout they pick any day next week??? Well, I'm now scheduled for April 9. Argh.)
My posts are never that organized so this will be no different. Try to keep up!
Good news: Valet parking is free during radiation treatments, I am required to see the doctor every week so that I can ask any questions and review any/all side effects and how to manage them. I can also "drop-in" anytime if I'm having issues. That's about all I can come up with on the good news side... other than the "it could be worse" point of view.
I should be fine the first 2 weeks and then the side effects start kicking in around week 3 and get progressively worse throughout the remaining treatments.
Side effects:
The skin in the treatment area may become red and itchy and may blister/peel (similar to a bad sunburn).
I'll feel tired (naps are nothing new to me).
Could get a sore throat making it difficult to swallow, therefore, difficult to eat & drink. Those are 2 VERY important things. If I start to lose weight, they'll put in a feeding tube. No thanks!
Change of taste, nausea & loss of appetite.
Hair loss in the treatment area. (My hair was already shaved a little bit behind my ear so I'm not going to worry about that one.)
Mouth sores.
Saliva changes (as in thick & sticky). The nurse said I would want to spit it out constantly, including in the middle of the night. He recommended sleeping sitting up about 45 degrees so I don't gag on it. (I think this is where I start to laugh. Really????)
If the mouth sores, sore throat or anything else cause too much pain, they'll put me on pain meds. If that happens, then we add a new side effect of constipation. I'm scheduled for a "Bowel Management Class." Really???? Laughing again.
There's also a list of things to avoid. Not that I'm a big drinker, but I'm really bummed that I can't have alcohol during the next 6 weeks. (We want what we can't have!) Also, no carbonated beverages, citrus juice, sharp-edged foods (chips, pretzels), or highly seasoned/spicy foods.
There are things I'm supposed to do to treat the side effects: (They actually gave me a checklist). These are all supposed to start on day 1.
Aquaphor ointment for skin burn - 3-4x daily
Baking soda mouth rinse - 4-6x daily (continue for 6 months after treatments stop)
Fluoride - 1x daily (continue forever)
Jaw, Neck & Throat exercises (6 exercises) - at least 3x daily (however, my plastic surgeon has not cleared me yet for neck exercises because I need more time for the surgical site to heal.) (Also continue these for several months after treatments)
Brush with Biotene or Sensodyne toothpaste.
That pretty much covers what we discussed in class. I then went to an exam room to wait on the team of doctors. They all came in -- about 6 people. One of the other doctors looked at my neck and they all left. Apparently they went somewhere else to review films and my proposed treatment plan and they all agreed. I got my radiation schedule, signed the consent form and left. My schedule is fine with me except for Fridays. All my appointments are late afternoon/evening. I need early appointments on Friday so I can hit the road and see my family! When I start on Monday, I'll see what I can do to change that.
(Side note: When I got home -- actually not even home, just stopped to pick up the kids -- I got a call from MDA that they had me scheduled for a hearing test on March 11. That would be today. I said "I don't think so!" I'm going to be there for the next 6 weeks! How 'bout they pick any day next week??? Well, I'm now scheduled for April 9. Argh.)
Monday, March 8, 2010
Simulation
I started off the day in the Dental Services area where I picked up the stent. I waited 1 hour to visit with the dentist for about 5 minutes. I popped in the wax mold to make sure it fit and off I went. It's a mouthful!
Next stop was the Radiation Treatment Center. We had a visit with Dr. Garden & Dr. Rineer (fellow). I was given a packet of information to read before class tomorrow about all the joys of radiation. Something came up and the drs left us waiting in the exam room. Finally we were called to the simulation area. This is where all the fun started. The radiation tech & student did a pretty good job of explaining the process. First, I put on a gown (just undressed from the waist up) and laid on the table. Dr. Rineer taped some kind of wire along the scars. He then outlined the surgical area on a "bolus" (looked like a sheet of gummy wax). That was cut out and taped to my head (yes, that had to be taped into my hair). Once I was flat on the table again, they strapped my hands down. The purpose of that was to pull my shoulders down. It didn't hurt; was mildly uncomfortable. Then, I needed to be lined up with the CT just so. They moved me around a few times to get situated exactly. They left the room to check the scan and came back and moved me some more. Now the fun started. The stent went into my mouth. They brought over the mesh for the cast of my face. It was warm and wet and covered me from the top of my head down to my shoulders. It was tied down and was molded to my face. As I said, it was mesh so I was able to breathe. I eventually realized it would be best to close my eyes. They put a cold towel on the mesh to help it set faster. Stent is still in my mouth. Then they brought out the magic markers and starting drawing on my face. And they drew a line down the middle of my chest and a line on each side under my arms. Those will be there throughout the treatments. Don't wash them off! If they start to fade, they'll re-draw them. They were in and out a couple of times. Since my eyes were closed I kind of "went somewhere else." They finally took the final CT scan. I was released! The tape was ripped out of my hair and I spit out the stent. All said & done it was 45 minutes. Back tomorrow.
Next stop was the Radiation Treatment Center. We had a visit with Dr. Garden & Dr. Rineer (fellow). I was given a packet of information to read before class tomorrow about all the joys of radiation. Something came up and the drs left us waiting in the exam room. Finally we were called to the simulation area. This is where all the fun started. The radiation tech & student did a pretty good job of explaining the process. First, I put on a gown (just undressed from the waist up) and laid on the table. Dr. Rineer taped some kind of wire along the scars. He then outlined the surgical area on a "bolus" (looked like a sheet of gummy wax). That was cut out and taped to my head (yes, that had to be taped into my hair). Once I was flat on the table again, they strapped my hands down. The purpose of that was to pull my shoulders down. It didn't hurt; was mildly uncomfortable. Then, I needed to be lined up with the CT just so. They moved me around a few times to get situated exactly. They left the room to check the scan and came back and moved me some more. Now the fun started. The stent went into my mouth. They brought over the mesh for the cast of my face. It was warm and wet and covered me from the top of my head down to my shoulders. It was tied down and was molded to my face. As I said, it was mesh so I was able to breathe. I eventually realized it would be best to close my eyes. They put a cold towel on the mesh to help it set faster. Stent is still in my mouth. Then they brought out the magic markers and starting drawing on my face. And they drew a line down the middle of my chest and a line on each side under my arms. Those will be there throughout the treatments. Don't wash them off! If they start to fade, they'll re-draw them. They were in and out a couple of times. Since my eyes were closed I kind of "went somewhere else." They finally took the final CT scan. I was released! The tape was ripped out of my hair and I spit out the stent. All said & done it was 45 minutes. Back tomorrow.
Saturday, March 6, 2010
Dental "impressions"
I'll start with a general update on the healing process. The swelling is going down, but it is still swollen. Or, it could be a combination of swelling and excess tissue that should shrink during radiation. I am sleeping flat now which makes a big difference in quality of sleep. Yesterday I found a lone stitch behind my ear. Tried to pull it out, but it seems to have found a permanent home. Same thing with a stitch in my leg. It REALLY bugs me. Just one of those things. I was treating my eye (because of the apparent lack of blinking) with "tear" drops and ointment. I haven't used the ointment the past couple of nights because it is affecting my vision and I use the drops ocassionally during the day. My eye really bothered me on the way home from Houston Thursday. Felt tired. Back to the leg... feeling much better and improving range of motion. Right after surgery I couldn't bend at the knee all the way. Now I can. The random shooting pain on the side of my leg has subsided considerably. As advised, I do try to remember to keep it wrapped if I'm going to be out & about for any length of time.
Now for the update on Thursday. I typically try to post quicker after my appointments so I can remember more, but the doctor I met sat with me for 45 minutes and gave me so much information that I wasn't going to remember it all anyway. Here's what I do remember.
Dr. Mark Chambers:
The purpose of this visit was to get impressions made for a stent that I will have in my mouth during radiation. I saw a sample of the final product. It looks like half of a mouthpiece with a big solid piece of plastic that connects the front to the back. That will force my tongue to the other side of my mouth and protect it from the radiation. It will also hold my mouth in the exact same position for each treatment. As I mentioned the doctor was with me for about 45 minutes and the topics of conversation were all over the map. I'll recap what I remember in no particular order.
*He asked me for a re-cap of my parotid history. I told him that my 2 previous surgeries were done at Methodist. He wanted to know why I didn't come straight to MD Anderson the first time. (I thought the question bordered on cocky.) I explained that I was in College Station and that I didn't have much confidence in my doctor there. My sister helped me find another doctor (long story) and that's how I ended up with Dr. A. Besides, as far as I knew, MD Anderson CANCER Center was for Cancer patients. I only ended up at MDA because Dr. A referred me there. He seemed satisfied with that answer.
*He corrected my terminology. I said I found "nodules" in my neck and he explained that they were actually "nodes" and what the difference was. He said I needed to be clear in that. (NOTE: I went back to the operative report from Dr. Weber. He removed "nodules" from my neck. WHATEVER!!)
*Side effects of radiation will include a burn to the skin especially since I'm so fair. Also, mucositis (mouth sores). Both, he said, could be treated. I think he said my taste buds would be effected too, but it was temporary.
*We discussed my possible hearing loss and he was going to order another hearing test. Still feels a bit stuffy - like a head cold on one side.
*He asked what I did for a living and I said "self-employed." I would have explained further, but he moved on. Later, he asked if my business was in accounting. I had to shake my head "no" since I had a mouthful of goo for the impressions. By the time he took it out, again, we had moved on. Next time...
*Speaking of next time, I go back on Monday to pick up the wax mold of the stent. I'll use it for the simulation later that morning. They'll take it back and make a permanent one of hard plastic.
Now for the update on Thursday. I typically try to post quicker after my appointments so I can remember more, but the doctor I met sat with me for 45 minutes and gave me so much information that I wasn't going to remember it all anyway. Here's what I do remember.
Dr. Mark Chambers:
The purpose of this visit was to get impressions made for a stent that I will have in my mouth during radiation. I saw a sample of the final product. It looks like half of a mouthpiece with a big solid piece of plastic that connects the front to the back. That will force my tongue to the other side of my mouth and protect it from the radiation. It will also hold my mouth in the exact same position for each treatment. As I mentioned the doctor was with me for about 45 minutes and the topics of conversation were all over the map. I'll recap what I remember in no particular order.
*He asked me for a re-cap of my parotid history. I told him that my 2 previous surgeries were done at Methodist. He wanted to know why I didn't come straight to MD Anderson the first time. (I thought the question bordered on cocky.) I explained that I was in College Station and that I didn't have much confidence in my doctor there. My sister helped me find another doctor (long story) and that's how I ended up with Dr. A. Besides, as far as I knew, MD Anderson CANCER Center was for Cancer patients. I only ended up at MDA because Dr. A referred me there. He seemed satisfied with that answer.
*He corrected my terminology. I said I found "nodules" in my neck and he explained that they were actually "nodes" and what the difference was. He said I needed to be clear in that. (NOTE: I went back to the operative report from Dr. Weber. He removed "nodules" from my neck. WHATEVER!!)
*Side effects of radiation will include a burn to the skin especially since I'm so fair. Also, mucositis (mouth sores). Both, he said, could be treated. I think he said my taste buds would be effected too, but it was temporary.
*We discussed my possible hearing loss and he was going to order another hearing test. Still feels a bit stuffy - like a head cold on one side.
*He asked what I did for a living and I said "self-employed." I would have explained further, but he moved on. Later, he asked if my business was in accounting. I had to shake my head "no" since I had a mouthful of goo for the impressions. By the time he took it out, again, we had moved on. Next time...
*Speaking of next time, I go back on Monday to pick up the wax mold of the stent. I'll use it for the simulation later that morning. They'll take it back and make a permanent one of hard plastic.
Friday, February 26, 2010
Gearing up for Radiation
I just got a call from Gary at MD Anderson. He's helping me get several appointments set-up just so I can get started on radiation treatments.
Step 1 is to meet with the dentist so that he can make a stint for my mouth. Hopefully we'll get that appointment set up for next week while we're already in Houston. That appointment will just consist of making impressions of my teeth. They will then make a stint that I think is supposed to keep my tongue out of the way during treatments.
Monday, March 8 I'll pick up the finished stint from the dentist. Then I meet with the Radiation Oncologist, Dr. Garden. From there I go for the Simulation where they basically make a netted cast of my face that will hold it in place for each treament. While my head is held down, they will do a CT Scan so they'll know exactly where to radiate.
Tuesday, March 9 I'll go to a class to learn more than I ever wanted to know about RT. From there I will have a multi-disciplinary appt with several doctors in the Radiation Dept. They all want to make sure they agree with the course of treatment.
I should start treatments the following week. 30 treatments. Now begins the logistics nightmare again. I already miss my family.
Step 1 is to meet with the dentist so that he can make a stint for my mouth. Hopefully we'll get that appointment set up for next week while we're already in Houston. That appointment will just consist of making impressions of my teeth. They will then make a stint that I think is supposed to keep my tongue out of the way during treatments.
Monday, March 8 I'll pick up the finished stint from the dentist. Then I meet with the Radiation Oncologist, Dr. Garden. From there I go for the Simulation where they basically make a netted cast of my face that will hold it in place for each treament. While my head is held down, they will do a CT Scan so they'll know exactly where to radiate.
Tuesday, March 9 I'll go to a class to learn more than I ever wanted to know about RT. From there I will have a multi-disciplinary appt with several doctors in the Radiation Dept. They all want to make sure they agree with the course of treatment.
I should start treatments the following week. 30 treatments. Now begins the logistics nightmare again. I already miss my family.
Tuesday, February 23, 2010
Dead Face
Shortly after my first surgery my husband and I started dating. We discovered during our courtship that I didn't have any feeling in my right ear. It was then dubbed the "dead ear." Eventually, I did gain some feeling back in it. However, I'm now told that I will never regain feeling in the new skin on my face so now we have "dead face."
We just returned from a very long day in Houston. We would have enjoyed the snow day much more had we stayed home than we did driving it in (and sitting in traffic!). I had two follow-up appointments today. Here's the summary:
Dr. Weber:
Pleased with the results. There are indicators with the slight movement I do have on the right side that everything will heal nicely. There's still a chance that I will have some permanent weakness in a few spots, but I can live with that. The greatest risk at this point is to my eye (more specifically, cornea) so I'm hoping I start blinking soon! Dr. Weber said the eye looks good so far, so the drops & ointment are doing the trick. He said that he had no idea how many tumors he took out, but that he took them out in one large mass. (I'll stick with the MRI report that counted at least 30.) The pathology report confirmed that everything is still benign. Yea! I asked about Frey Syndrome -- no sign of it yet. He said it could take 6 months for that to appear. I had another minor complaint... my wrist has been bothering me from the IV's. He said warm compresses & Advil. (Didn't seem like a big deal, but it's bothering me. Oh well.)
So, the big question of the day was radiation: to do or not to do? We're doing it. They'll set up an appointment for me to see the Radiation Oncologist in a couple of weeks to get the ball rolling. Ideally, radiation will STOP the tumor growth. Of course, there are no guarantees. Dr. Weber wants me to heal before getting started, but doesn't want to give the tumors time to start growing again. If they start growing, the radiation is much less effective. Dr. Weber doesn't think the radiation will slow the healing of the nerves.
There were a couple of things he said I should talk to Dr. Gidley about -- hearing & an ocassional sharp pain in my tongue when I drink something very cold. Guess I should get around to that, but not high on my list right now.
Go back in 8 weeks.
Dr. Skoracki:
The PA came in first and took out all the stitches in my face. Yea! Everything is healing nicely. Then Dr. S came in. I started out by telling him that I had a bone to pick with him. He told me to get in line! I informed him that I did not like being awakened in the OR after surgery. He said that he wanted to see me smile and I told him it was a bit unnerving to wake up in the OR. He said he'd make sure I have more drugs next time so I don't remember!
I had a list of questions so I'll just run through the answers...
*It's possible that I'll need a revision surgery on my leg & face. We'll wait at least 6 months to see how it all settles out. My leg pooches out a little bit at the top of the incision. My face may need to be re-contoured (or something like that).
*I can use any kind of cream or ointment on my scars that I choose in 2-3 weeks. He said the ointment doesn't really do anything, it's the massaging that helps.
*I can lie flat now as long as I can tolerate it and the swelling doesn't get too out-of-hand.
*I can turn my head a little more, but still don't overdo it. Can't lift it all the way up and shouldn't look over my shoulders.
*At first he said I had no limitations as far as my leg was concerned. Then he revised that saying I should not run or go to spin class or anything like that. Whew! I was just about to join a gym. Really. ha! However, he did say I can now soak in a tub. That's more like it!
*Most nerve function should return in about 6 weeks. He disagreed with Dr. Weber and said that radiation would slow it down.
*Radiation doesn't affect swelling, but it does shrink/firm tissue which will help the extra padding on dead face.
*If I am going to be on my feet for any length of time, I need to wear the Ace bandage on my leg to prevent fluid from building up.
*No restrictions on driving since I'm off the narcotics.
*He said the sharp pain in my leg that pops up on ocassion should be temporary and I can massage it out to help relieve the pain.
*I shouldn't lose any tone in my face since he expects the nerve loss to be short.
*The flap will always be discolored, but we can address other options later.
Go back in 4 weeks.
We just returned from a very long day in Houston. We would have enjoyed the snow day much more had we stayed home than we did driving it in (and sitting in traffic!). I had two follow-up appointments today. Here's the summary:
Dr. Weber:
Pleased with the results. There are indicators with the slight movement I do have on the right side that everything will heal nicely. There's still a chance that I will have some permanent weakness in a few spots, but I can live with that. The greatest risk at this point is to my eye (more specifically, cornea) so I'm hoping I start blinking soon! Dr. Weber said the eye looks good so far, so the drops & ointment are doing the trick. He said that he had no idea how many tumors he took out, but that he took them out in one large mass. (I'll stick with the MRI report that counted at least 30.) The pathology report confirmed that everything is still benign. Yea! I asked about Frey Syndrome -- no sign of it yet. He said it could take 6 months for that to appear. I had another minor complaint... my wrist has been bothering me from the IV's. He said warm compresses & Advil. (Didn't seem like a big deal, but it's bothering me. Oh well.)
So, the big question of the day was radiation: to do or not to do? We're doing it. They'll set up an appointment for me to see the Radiation Oncologist in a couple of weeks to get the ball rolling. Ideally, radiation will STOP the tumor growth. Of course, there are no guarantees. Dr. Weber wants me to heal before getting started, but doesn't want to give the tumors time to start growing again. If they start growing, the radiation is much less effective. Dr. Weber doesn't think the radiation will slow the healing of the nerves.
There were a couple of things he said I should talk to Dr. Gidley about -- hearing & an ocassional sharp pain in my tongue when I drink something very cold. Guess I should get around to that, but not high on my list right now.
Go back in 8 weeks.
Dr. Skoracki:
The PA came in first and took out all the stitches in my face. Yea! Everything is healing nicely. Then Dr. S came in. I started out by telling him that I had a bone to pick with him. He told me to get in line! I informed him that I did not like being awakened in the OR after surgery. He said that he wanted to see me smile and I told him it was a bit unnerving to wake up in the OR. He said he'd make sure I have more drugs next time so I don't remember!
I had a list of questions so I'll just run through the answers...
*It's possible that I'll need a revision surgery on my leg & face. We'll wait at least 6 months to see how it all settles out. My leg pooches out a little bit at the top of the incision. My face may need to be re-contoured (or something like that).
*I can use any kind of cream or ointment on my scars that I choose in 2-3 weeks. He said the ointment doesn't really do anything, it's the massaging that helps.
*I can lie flat now as long as I can tolerate it and the swelling doesn't get too out-of-hand.
*I can turn my head a little more, but still don't overdo it. Can't lift it all the way up and shouldn't look over my shoulders.
*At first he said I had no limitations as far as my leg was concerned. Then he revised that saying I should not run or go to spin class or anything like that. Whew! I was just about to join a gym. Really. ha! However, he did say I can now soak in a tub. That's more like it!
*Most nerve function should return in about 6 weeks. He disagreed with Dr. Weber and said that radiation would slow it down.
*Radiation doesn't affect swelling, but it does shrink/firm tissue which will help the extra padding on dead face.
*If I am going to be on my feet for any length of time, I need to wear the Ace bandage on my leg to prevent fluid from building up.
*No restrictions on driving since I'm off the narcotics.
*He said the sharp pain in my leg that pops up on ocassion should be temporary and I can massage it out to help relieve the pain.
*I shouldn't lose any tone in my face since he expects the nerve loss to be short.
*The flap will always be discolored, but we can address other options later.
Go back in 4 weeks.
Wednesday, February 17, 2010
Surgery recap
Some of this may be a repeat of the past two posts, but I was on drugs for one and didn't write the other. I wanted to write a record of the past week as best I can remember it.
Surgery day:
We got the hospital at 5:15 to check-in. The whole family (mom, dad, sister) met us there. I got checked in and realized that I forgot the ID bracelet I had been given the day before. Kelly ran back to the hotel to get it which only took about 15 minutes then we were all set. I was taken back pretty quickly to get prepped. At 6:50, I got my "margarita" and that's the last thing I remember until they woke me up in the OR when it was all over. Apparently that was around 6PM. I was a little confused because it felt like I had just gone to sleep. Then the pain hit. I remember being in recovery with Dad, Marian & Kelly. Marian got in trouble for pushing my morphine button. Apparently I'm supposed to do that myself. The nurse asked what I had been given for pain in the past that worked for me. I said I didn't know because I had never been in that much pain before. (On a scale of 1-10, I think I said 9.) I think I was in recovery for a couple of hours before being moved to a holding room... still recovery, but not ICU... my bed just wasn't ready yet so I stayed the night there. They moved me to a hospital bed and that was no fun at all. Lots of flopping around and then they got me cleaned off and changed. That part is a bit fuzzy. I think it was midnight before I got settled in and Dad & Marian left.
Thursday:
I don't remember much through the night. They kept telling me that I had a room, but it wasn't ready yet. That seemed to take a long time, but what do I know! Mom came by in the morning just before I got moved. I still had the morphine button, but now my family members made sure it was constantly being pushed. For the most part I stayed in bed and doped up. The catheter was removed so that did require making it as far as my personal port-a-potty. Dad went home Thursday and then got sick. That caused a shuffle in the plan for my kids, but it all worked out thanks to dear friends & family!
Friday:
I woke up feeling better and Dr. Skoracki (plastics) came in to check on me. Said it was ok to shower. I thought that was a grand idea and jumped on it. Maybe not such a bright idea after all. I spent the rest of Friday trying to stop the pain. They juggled my meds a bit. Something they gave me made me nauseous. We finally settled on Dilaudid. My new friend. Occasionally morphine would have to make a comeback. I think this was the day the first neck drain came out.
Saturday:
My kids came to visit! They were making the hand-off to head to Dallas with Auntie M. It was so great to see them. Nathan was a bit cranky (found out later he had pink-eye. Great.) Ella was in a great mood and adjusted well to seeing mommy at less than her best (OK, at her worst.) I was sad to see them go, but knew it was best for everyone. It was really hard to tell Marian good-bye. I don't think I couldn't have gotten through those first 3 days without her! Saturday night my dear friend, Linda, came by. Great to see her. Mom & Kelly both got a break and she stayed with me for a couple of hours.
Sunday:
Mom sent Kelly home (i.e. hotel) in the morning (as she or Marian did every morning). I sleep off & on and she reads her book. We settled into a nice routine. I was feeling much better. Kelly needed to get some rest before our big Valentine's date. We always have pizza and rent a movie and this year was going to be no different. I did have another visitor in the afternoon -- Dr Alford and his wife. It was so great to see him and meet her. I was in the hall walking around and mom had gone to ask the nurse something when I saw him roll in. We said our greetings and then he started asking questions. He wanted to know about medications and what I was getting to prevent blood clots. The nurse walked up and we asked her. She looked at him like, just who do you think you are???? He explained that he was my referring physician and so she answered his questions. (I don't remember her name -- not my favorite nurse!) We made it to my room and chatted for a bit. Mary asked if there was anything we needed while in Houston and I told her we needed a recommendation for a great pizza place. Star Pizza. Awesome. Kelly missed the visit, but came back shortly after they left. We got our pizza and watched Paul Blart, Mall Cop. Funny. Dumb. As expected. Kelly brought me a special Valentine's dessert and we exchanged cards. Awww.
Monday:
I got to go home! They pulled the other neck drain, but said I'd have to go home with the leg drain so we received instruction on how to care for it. Mom headed out shortly before we did. Before she left she made sure to get a walker, potty seat & shower seat all lined up for me. Awesome! We decided to spend one more night in Houston...just in case. We had a nice lunch at La Madeline. My first appearance in the outside world. A little self-conscious. We went to our new hotel and I took a nice long nap. Uninterrupted. We ate in and played games. Didn't sleep too well that first night out.
We came home on Tuesday and I've only taken a few prescription pain meds. Pretty much on Advil now. The leg drain came out today. I didn't sleep great last night, but took a good nap this afternoon. We went to church this morning (Ash Wednesday). For the most part, people tell me I look good (my mother says I'm beautiful, but I can promise you this is a face only a mother could love!!). Then you have the one truth-teller (which I appreciate & find refreshing.) She told me that I looked good and then I pulled my hair back. She gasped and looked horrified. Thank you! To be clear, to look at me head-on with no expression on my face and my hair strategically placed, I don't look too bad. Mostly normal in fact. However, I am mostly paralyzed on the right side of my face. Half-smile. Talk funny. Dribble when I drink. You get the idea. I can close my right eye, but it doesn't voluntarily blink. There are indicators that this should definitely be short-term. Not sure exactly what that means. Then there are the scars and swelling. We measured the facial scars... 16 inches. The incision on my thigh is 11 inches. The swelling is rather extreme right now, although I'm told that it has gotten much better. Yikes! (I didn't look in the mirror until Saturday.) Honestly, it looks like I swallowed a cantaloupe and it is lodged in my throat. The bruising is nice too. Yellow bruise that goes from my face, down my neck to the front my chest.
I go back to the doctor(s) on Tuesday. I'll try to keep this updated with my progress.
Surgery day:
We got the hospital at 5:15 to check-in. The whole family (mom, dad, sister) met us there. I got checked in and realized that I forgot the ID bracelet I had been given the day before. Kelly ran back to the hotel to get it which only took about 15 minutes then we were all set. I was taken back pretty quickly to get prepped. At 6:50, I got my "margarita" and that's the last thing I remember until they woke me up in the OR when it was all over. Apparently that was around 6PM. I was a little confused because it felt like I had just gone to sleep. Then the pain hit. I remember being in recovery with Dad, Marian & Kelly. Marian got in trouble for pushing my morphine button. Apparently I'm supposed to do that myself. The nurse asked what I had been given for pain in the past that worked for me. I said I didn't know because I had never been in that much pain before. (On a scale of 1-10, I think I said 9.) I think I was in recovery for a couple of hours before being moved to a holding room... still recovery, but not ICU... my bed just wasn't ready yet so I stayed the night there. They moved me to a hospital bed and that was no fun at all. Lots of flopping around and then they got me cleaned off and changed. That part is a bit fuzzy. I think it was midnight before I got settled in and Dad & Marian left.
Thursday:
I don't remember much through the night. They kept telling me that I had a room, but it wasn't ready yet. That seemed to take a long time, but what do I know! Mom came by in the morning just before I got moved. I still had the morphine button, but now my family members made sure it was constantly being pushed. For the most part I stayed in bed and doped up. The catheter was removed so that did require making it as far as my personal port-a-potty. Dad went home Thursday and then got sick. That caused a shuffle in the plan for my kids, but it all worked out thanks to dear friends & family!
Friday:
I woke up feeling better and Dr. Skoracki (plastics) came in to check on me. Said it was ok to shower. I thought that was a grand idea and jumped on it. Maybe not such a bright idea after all. I spent the rest of Friday trying to stop the pain. They juggled my meds a bit. Something they gave me made me nauseous. We finally settled on Dilaudid. My new friend. Occasionally morphine would have to make a comeback. I think this was the day the first neck drain came out.
Saturday:
My kids came to visit! They were making the hand-off to head to Dallas with Auntie M. It was so great to see them. Nathan was a bit cranky (found out later he had pink-eye. Great.) Ella was in a great mood and adjusted well to seeing mommy at less than her best (OK, at her worst.) I was sad to see them go, but knew it was best for everyone. It was really hard to tell Marian good-bye. I don't think I couldn't have gotten through those first 3 days without her! Saturday night my dear friend, Linda, came by. Great to see her. Mom & Kelly both got a break and she stayed with me for a couple of hours.
Sunday:
Mom sent Kelly home (i.e. hotel) in the morning (as she or Marian did every morning). I sleep off & on and she reads her book. We settled into a nice routine. I was feeling much better. Kelly needed to get some rest before our big Valentine's date. We always have pizza and rent a movie and this year was going to be no different. I did have another visitor in the afternoon -- Dr Alford and his wife. It was so great to see him and meet her. I was in the hall walking around and mom had gone to ask the nurse something when I saw him roll in. We said our greetings and then he started asking questions. He wanted to know about medications and what I was getting to prevent blood clots. The nurse walked up and we asked her. She looked at him like, just who do you think you are???? He explained that he was my referring physician and so she answered his questions. (I don't remember her name -- not my favorite nurse!) We made it to my room and chatted for a bit. Mary asked if there was anything we needed while in Houston and I told her we needed a recommendation for a great pizza place. Star Pizza. Awesome. Kelly missed the visit, but came back shortly after they left. We got our pizza and watched Paul Blart, Mall Cop. Funny. Dumb. As expected. Kelly brought me a special Valentine's dessert and we exchanged cards. Awww.
Monday:
I got to go home! They pulled the other neck drain, but said I'd have to go home with the leg drain so we received instruction on how to care for it. Mom headed out shortly before we did. Before she left she made sure to get a walker, potty seat & shower seat all lined up for me. Awesome! We decided to spend one more night in Houston...just in case. We had a nice lunch at La Madeline. My first appearance in the outside world. A little self-conscious. We went to our new hotel and I took a nice long nap. Uninterrupted. We ate in and played games. Didn't sleep too well that first night out.
We came home on Tuesday and I've only taken a few prescription pain meds. Pretty much on Advil now. The leg drain came out today. I didn't sleep great last night, but took a good nap this afternoon. We went to church this morning (Ash Wednesday). For the most part, people tell me I look good (my mother says I'm beautiful, but I can promise you this is a face only a mother could love!!). Then you have the one truth-teller (which I appreciate & find refreshing.) She told me that I looked good and then I pulled my hair back. She gasped and looked horrified. Thank you! To be clear, to look at me head-on with no expression on my face and my hair strategically placed, I don't look too bad. Mostly normal in fact. However, I am mostly paralyzed on the right side of my face. Half-smile. Talk funny. Dribble when I drink. You get the idea. I can close my right eye, but it doesn't voluntarily blink. There are indicators that this should definitely be short-term. Not sure exactly what that means. Then there are the scars and swelling. We measured the facial scars... 16 inches. The incision on my thigh is 11 inches. The swelling is rather extreme right now, although I'm told that it has gotten much better. Yikes! (I didn't look in the mirror until Saturday.) Honestly, it looks like I swallowed a cantaloupe and it is lodged in my throat. The bruising is nice too. Yellow bruise that goes from my face, down my neck to the front my chest.
I go back to the doctor(s) on Tuesday. I'll try to keep this updated with my progress.
Saturday, February 13, 2010
Baby Steps
Maybe I should call this "one step forward, two steps back." Night before last was really good so I went all out yesterday morning, then paid for it the rest of the day. Who knew that a shower could be so taxing? Late last night I finally got caught up on pain meds although those have a whole new set of side effects, namely nausea and loss of appetite. Yes, I actually lost my appetite! We have again adjusted the pain meds today and I think we might have a winner.
I just got back from visiting my sweet babies downstairs. That took a lot out of me, but it was worth it. I know that I'm quite a sight, but they took it in stride. I even managed to get a few kisses out of them. They went home with Auntie M. I know they are so excited to see their cousins. Kelly is on his way up with some lunch. Whoever said that hospital food has improved is lying. I'm done with hospital food. Except for maybe the cheese ravioli and the ice cream.
I did graduate from the antibiotic today and lost one of my drains. Progress!
I just got back from visiting my sweet babies downstairs. That took a lot out of me, but it was worth it. I know that I'm quite a sight, but they took it in stride. I even managed to get a few kisses out of them. They went home with Auntie M. I know they are so excited to see their cousins. Kelly is on his way up with some lunch. Whoever said that hospital food has improved is lying. I'm done with hospital food. Except for maybe the cheese ravioli and the ice cream.
I did graduate from the antibiotic today and lost one of my drains. Progress!
Friday, February 12, 2010
Hi! This is Natalie's favorite sister. Here's the latest.
Surgery was considered a success. Twelve hours was on the low end of the estimate and that's exactly how long it was. Dr. Weber told the family she had more tumor than he had ever seen. He said it was tedious but that he got everything he could see. Best news we heard all day was that he spared the facial nerve!!!!! Dr. Gidley performed the mastoidectomy without a problem and Dr. Skoracki did the thigh flap.
She spent the night in recovery and was moved to a room yesterday. Morpine was her new best friend and the mean nurses took it away early this morning. She misses her old friend. Seriously, the day has been rough. She's in a lot of pain and is fighting nausea. She gets shots in the stomach to thin her blood in order to prevent blood clots and she's not fond of those.
She's been up for potty breaks and that's about all she can handle out of the bed. Her leg bothers her as much as her face and neck. The graft seems to be taking well and has great circulation. Although she hasn't seen it, I can tell you that her swelling has already begun to subside. As expected she has some paralysis on her right side which will resolve in the coming months.
Let the healing begin!
Surgery was considered a success. Twelve hours was on the low end of the estimate and that's exactly how long it was. Dr. Weber told the family she had more tumor than he had ever seen. He said it was tedious but that he got everything he could see. Best news we heard all day was that he spared the facial nerve!!!!! Dr. Gidley performed the mastoidectomy without a problem and Dr. Skoracki did the thigh flap.
She spent the night in recovery and was moved to a room yesterday. Morpine was her new best friend and the mean nurses took it away early this morning. She misses her old friend. Seriously, the day has been rough. She's in a lot of pain and is fighting nausea. She gets shots in the stomach to thin her blood in order to prevent blood clots and she's not fond of those.
She's been up for potty breaks and that's about all she can handle out of the bed. Her leg bothers her as much as her face and neck. The graft seems to be taking well and has great circulation. Although she hasn't seen it, I can tell you that her swelling has already begun to subside. As expected she has some paralysis on her right side which will resolve in the coming months.
Let the healing begin!
Tuesday, February 9, 2010
Countdown - less than 11 hours
Surgery is less than 10 hours away although I do have to be there at 5:15. Yikes! Should I even go to sleep?? Let's see if I can re-cap the appointments today:
Audiology
A ridiculous amount of beeeeeps in each ear. Oh, and let's add wind noise too. After about 30 minutes of that, I was told I have high frequency hearing loss. Apparently no big deal. I'll go back about a month after surgery to make sure that doesn't change.
Anesthesology
We covered the basics. No problems in the past with anesthesia. I'm supposed to get the "good stuff" about 30 minutes after I arrive. Good thing because I imagine I'll be a bit antsy by then... a bit MORE antsy by then. I wanted to verify that the breathing tube will be long gone before I wake up. We also discussed the recent episode of "Grey's Anatomy" where the patient woke up during the middle of surgery. I'm not really concerned about that, but had to bring it up anyway. The anesthesiologist said there would be 2 people monitoring me the whole time, but they will give each other breaks periodically.
Gidley
Nothing new. Reviewed the same risks. The most likely side effects will be taste disturbance & dizziness.
Weber
Re-iterated that nerve loss is a very real possibility. They are going to try to save the facial nerve, but no promises. Even with a nerve graft there's a less than 50% chance of re-gaining facial function. There was also mention of a few other side effects, but he said those should be the least of my worries. One was Frey's syndrome and I forget the other one, but it would cause a sharp pain in my mouth when I first eat or drink something. He also said that he thinks there are more tumors now than when I first saw him (this from the man that couldn't remember my name, but he remembers my tumors!!) And those pesky tumors seem to be crawling down my neck now. Good golly, let's get these things out of there and zap them!
Dr. Gidley will work with Dr. Weber to identify the facial nerve. After he's done his part, he expects to leave about 2 hours into the surgery. Then Dr. Weber gets to work on clearing it all out. He said it would be a very long process. The plastic surgeon probably won't be called in until later in the afternoon. I'm fully expecting the ALT flap which means one night in ICU. Not sure when I can update again, but I'll do my best. Maybe I can dictate.
Audiology
A ridiculous amount of beeeeeps in each ear. Oh, and let's add wind noise too. After about 30 minutes of that, I was told I have high frequency hearing loss. Apparently no big deal. I'll go back about a month after surgery to make sure that doesn't change.
Anesthesology
We covered the basics. No problems in the past with anesthesia. I'm supposed to get the "good stuff" about 30 minutes after I arrive. Good thing because I imagine I'll be a bit antsy by then... a bit MORE antsy by then. I wanted to verify that the breathing tube will be long gone before I wake up. We also discussed the recent episode of "Grey's Anatomy" where the patient woke up during the middle of surgery. I'm not really concerned about that, but had to bring it up anyway. The anesthesiologist said there would be 2 people monitoring me the whole time, but they will give each other breaks periodically.
Gidley
Nothing new. Reviewed the same risks. The most likely side effects will be taste disturbance & dizziness.
Weber
Re-iterated that nerve loss is a very real possibility. They are going to try to save the facial nerve, but no promises. Even with a nerve graft there's a less than 50% chance of re-gaining facial function. There was also mention of a few other side effects, but he said those should be the least of my worries. One was Frey's syndrome and I forget the other one, but it would cause a sharp pain in my mouth when I first eat or drink something. He also said that he thinks there are more tumors now than when I first saw him (this from the man that couldn't remember my name, but he remembers my tumors!!) And those pesky tumors seem to be crawling down my neck now. Good golly, let's get these things out of there and zap them!
Dr. Gidley will work with Dr. Weber to identify the facial nerve. After he's done his part, he expects to leave about 2 hours into the surgery. Then Dr. Weber gets to work on clearing it all out. He said it would be a very long process. The plastic surgeon probably won't be called in until later in the afternoon. I'm fully expecting the ALT flap which means one night in ICU. Not sure when I can update again, but I'll do my best. Maybe I can dictate.
Monday, February 8, 2010
Countdown - less than 36 hours
I'm in Houston with less than 36 hours until surgery. Tomorrow I have 4 appointments: Audiology, Anesthesia, Gidley & Weber. I'm assuming that I will find out what time to be at the hospital Wednesday morning. It will surely be some ridiculous hour, but I guess it'll be good to get an early start since it will take ALL DAY! I'm glad that I get to see the doctors one more time tomorrow because I have a few more questions.
Last night I had a hard time falling asleep and then I woke up early. I'm hoping that tonight will go better, but I'm not holding my breath. I'm now to the point where I have a constant knot in my stomach. I think about it pretty much every minute of the day. It's difficult to tell myself that everything will be just fine while still preparing myself, just in case, for the worst case. (Actually, worst case is something we won't talk about; I'm referring to the nerve graft scenario.)
Tonight I will close my eyes and think happy thoughts...
Last night I had a hard time falling asleep and then I woke up early. I'm hoping that tonight will go better, but I'm not holding my breath. I'm now to the point where I have a constant knot in my stomach. I think about it pretty much every minute of the day. It's difficult to tell myself that everything will be just fine while still preparing myself, just in case, for the worst case. (Actually, worst case is something we won't talk about; I'm referring to the nerve graft scenario.)
Tonight I will close my eyes and think happy thoughts...
Wednesday, January 20, 2010
Dentist & Plastic Surgeon
Tuesday, January 19, 2010
Dr. Jack Martin, Dental Oncology
I met with Dr. Martin. He just did a quick oral exam and cleared me for surgery. I'm going to see Dr. Chambers before I start radiation to get more information on the effects to my teeth & mouth. Dr. Martin did say that before radiation I would need to start using fluoride...forever. He said there was a chance that my dental implant would "scatter" the radiation which could cause sores inside my mouth. He also told me that if I ever need to have dental surgery or extractions, that I should go back to MDA to get it done. Ever.
Dr. Roman Skoracki, Reconstructive Surgery
We started out by discussing what happens if I have to have a nerve graft. (I made him repeat several times that we are hoping this is NOT necessary, but I have to be prepared just in case.) First, if they cut the nerve, they will use a nerve from my thigh to re-connect the nerve. This is not like splicing wires, more like a conduit so that they two ends can eventually grow together. This would take at least 6 months. In the meantime, with no nerve function, everthing starts to sag. In order to keep my lower eyelid from sagging, they would perform a tarsorrhaphy and canthopexy (look it up). I would also have a gold weight placed in my eyelid to help with blinking. My eyelid would not stay closed when sleeping so I'd have to tape it closed. Then to keep my mouth from sagging, a fascial static sling -- that's where they pull fascia from my thigh and use it to pull up the corner of my mouth. (It sounds positively lovely... too bad I can't describe it better. Again, google it.)
Let's move on to the free tissue transfer. We're pretty sure this will have to be done. Some skin will probably need to be removed because the tumors are so close that they can't be separated. That skin needs to be replaced so again, back to my thigh. They'll pull skin and tissue from my thigh to fill in the new hole on the side of my face. The tissue has to be "connected" to my face by attaching the blood vessels. Apparently, there's a risk of blood clots which could be really ugly. If that was going to happen, it would happen in the first 5 days so I'll be staying put for at least that long. (By the way, that's called an anterolateral thigh flap (ALT).) Ideally, they will be able to close up my thigh without a problem, but if there's not enough skin to close up, they do a skin graft from either my other thigh or forearm. With all this digging around in my thigh, there will be a scar from almost hip to knee.
Back to surgery time - Last I heard, each of the ear doctors will take about 3 hours. Plastics will take 5-8 hours if just skin flap, 8-10 if nerve graft too. 3+3+6=12 hours! The plastic surgeon said he come by before surgery to make sure everything he needs is good to go. Then the other surgeons will keep in contact with him throughout the day and let him know when to come in and get started on his part. There's supposed to be a surgery liasion that comes out every 2 hours to let my family know how I'm doing.
This surgery is obviously a bit more involved than the previous two. Sounds like the thigh part is going to slow me down the most. I was told to expect to be down for at least 3-4 weeks. Of course, once I recover from that, radiation therapy starts. Still not sure exactly what to expect with that.
I'm asking that everyone pray for my daughter. She's having surgery the week before me and she has to be 100% before I go under!!!
Dr. Jack Martin, Dental Oncology
I met with Dr. Martin. He just did a quick oral exam and cleared me for surgery. I'm going to see Dr. Chambers before I start radiation to get more information on the effects to my teeth & mouth. Dr. Martin did say that before radiation I would need to start using fluoride...forever. He said there was a chance that my dental implant would "scatter" the radiation which could cause sores inside my mouth. He also told me that if I ever need to have dental surgery or extractions, that I should go back to MDA to get it done. Ever.
Dr. Roman Skoracki, Reconstructive Surgery
We started out by discussing what happens if I have to have a nerve graft. (I made him repeat several times that we are hoping this is NOT necessary, but I have to be prepared just in case.) First, if they cut the nerve, they will use a nerve from my thigh to re-connect the nerve. This is not like splicing wires, more like a conduit so that they two ends can eventually grow together. This would take at least 6 months. In the meantime, with no nerve function, everthing starts to sag. In order to keep my lower eyelid from sagging, they would perform a tarsorrhaphy and canthopexy (look it up). I would also have a gold weight placed in my eyelid to help with blinking. My eyelid would not stay closed when sleeping so I'd have to tape it closed. Then to keep my mouth from sagging, a fascial static sling -- that's where they pull fascia from my thigh and use it to pull up the corner of my mouth. (It sounds positively lovely... too bad I can't describe it better. Again, google it.)
Let's move on to the free tissue transfer. We're pretty sure this will have to be done. Some skin will probably need to be removed because the tumors are so close that they can't be separated. That skin needs to be replaced so again, back to my thigh. They'll pull skin and tissue from my thigh to fill in the new hole on the side of my face. The tissue has to be "connected" to my face by attaching the blood vessels. Apparently, there's a risk of blood clots which could be really ugly. If that was going to happen, it would happen in the first 5 days so I'll be staying put for at least that long. (By the way, that's called an anterolateral thigh flap (ALT).) Ideally, they will be able to close up my thigh without a problem, but if there's not enough skin to close up, they do a skin graft from either my other thigh or forearm. With all this digging around in my thigh, there will be a scar from almost hip to knee.
Back to surgery time - Last I heard, each of the ear doctors will take about 3 hours. Plastics will take 5-8 hours if just skin flap, 8-10 if nerve graft too. 3+3+6=12 hours! The plastic surgeon said he come by before surgery to make sure everything he needs is good to go. Then the other surgeons will keep in contact with him throughout the day and let him know when to come in and get started on his part. There's supposed to be a surgery liasion that comes out every 2 hours to let my family know how I'm doing.
This surgery is obviously a bit more involved than the previous two. Sounds like the thigh part is going to slow me down the most. I was told to expect to be down for at least 3-4 weeks. Of course, once I recover from that, radiation therapy starts. Still not sure exactly what to expect with that.
I'm asking that everyone pray for my daughter. She's having surgery the week before me and she has to be 100% before I go under!!!
Thursday, January 14, 2010
Dentist appt
I called my local dentist this week to ask about getting a night guard. Apparently I'm a long-time teeth grinder. I got a night guard several years ago, but it broke about two years ago. Because it was no longer covered on my insurance, I never had it replaced. Well, now I thought it might be worth looking into since I'm hearing that radiation will make my teeth more brittle. My dentist agreed that grinding my teeth would probably do even more damage after radiation. So, I went in yesterday to get the impressions made. I go back on Feb 1 to get fitted. Good timing since my daughter's surgery is scheduled for Feb 3. My dentist also recommended getting fluoride trays so he threw that in, as well. I'll find out what the dental oncologist recommends on Tuesday.
Subscribe to:
Posts (Atom)