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.
Wednesday, February 17, 2010
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.
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