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!!!
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