ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: kmr1969 on October 11, 2012, 07:25:30 am
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Surgery set for 11/13 with Drs. Brackmann and Schwartz at the House Clinic.
I think I knew this would be the decision from early on in the research process, but had (and have) so much anxiety over surgery, I just didn’t want to accept it. Final straw was talking with a radiation oncologist whose recommendation was microsurgery over his own expertise, Gamma Knife.
Looking for any advice, comments, and encouragement (especially from House Clinic alumni) on what to take and how to make it through the process as smoothly as possible. Traveling from the East Coast to the West Coast and having to leave two middle schoolers behind is making this very difficult. I can’t seem to get over a feeling of guilt for having to put my family through this experience.
Thanks for the feedback!
Ken
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Hi Ken, I'm heading into work so this will be short. Please feel free to ask any questions you may have. There are many of us who were lucky enough to have our surgeries with HEI surgeons. You are in good hands! I took pictures of my family I taped to the wall and my favorite robe, and pillow and colorful blanket for the bed while in the hospital and as an outpatient at Seton. Seton Hall was a very convenient place to stay for the week after surgery. My thoughts are with you and your family.
Karen
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Hi Ken,
You are no doubt a terrific dad to worry about the impact on your family. I am four weeks post translab and doing very well (go to work tomorrow). I did not tell my 5th grader and high schooler until I was quite at peace with the decision and the confidence my surgeons inspired (bout a week before surgery). Kids will handle things depending on how things are presented to them. In the same way that our children's lives impact us, sometimes what happens to us plays a major role in their lives. I used the opportunity to reinforce their responsibility in the family and also to draw strength in our faith. After hearing and reading all advice and doing all research, you will find what is best for your family. I also brought a photo album of my family members to the hospital (photos that made me smile). Besides that, the most important thing to bring to surgery is a loved one to provide comfort. Its difficult to put ourselves on the receiving end of caregiving, but you need to do this for yourself and your family for the immediate future so that you can return to your former role as soon as possible. Keeping you in prayer for a successful surgery and speedy recovery.
s
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Thanks for responding Karen.
I understand I will be getting a packet from House, but wondering what happens on the day prior to surgery? What tests do they put you through and did you have to do another MRI? What was your experience the day of surgery?
I will be having translab for a 2.8 cm, right side AN.
Thanks,
Ken
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You'll meet with the surgeons, have a hearing test, a balance test, and you'll see an internist for a medical pre-surgery exam. The business office will also make sure all your paperwork is in order. It took most of the day.
Karen
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Sheila,
Thanks for your words of encouragement. I'm glad to hear you are recovering so well. I hope I am as fortunate. Did you go to House, or somewhere else?
I have awesome kids and know they will do great and be a big help to the family that will be watching over them.
Making the decision for surgery was hard enough, but knowing that this decision would take me 3,000 miles away from home made it even tougher. Especially since I have 2 nearby hospitals (Johns Hopkins and University of MD Medical System) with AN experience, but my wife and I just felt the most comfortable with Dr. Brackmann.
Best wishes for a continued great recovery.
Ken
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Hi Ken
I am now 7 months post op Dr. Friedman & Schwartz. You are in wonderful hands. I met Dr. Brackman post op and he took my sutures out. Very nice man. Prayers for you. Anxieity is the hardest part.
Mindy
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Thanks Mindy and I sincerely appreciate the prayers.
My original diagnosis was in early July and I just told my parents today as I didn't want to tell them until I had a plan of action in motion. Not an easy conversation, but I used a lot of what I've read on the forum to explain it to them as best I could. Mom took it better than Dad.
Another hurdle down.
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It is a difficult thing for parents to hear.
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I'm having my surgery at Vanderbilt on that same day. Best wishes to you and your family.
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Chance1212,
Thanks and good luck to you as well. I'm glad it is a Tuesday the 13th and not a Friday the 13th.
Booking flights today and just got a list of lab tests that need to be taken care of before I meet with the doctors. Staying bust helps.
I have a calendar on which I am marking off the days with "Tumor Free" written on the surgery day. Trying to convince myself that surgery day is something to look forward to and not something to dread. Not much luck with that yet, but trying my best.
Hang in there,
Ken
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Healing thoughts and prayers will continue to be with you both.
karen
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Good Luck Ken, thanks for the kind words on my other thread.
You really hit the nail on the head when you said you had guilt for putting your family through this. That is my #1 overwhelming feeling as well. My son is 6 and just doesn't understand why superdad is not well. Not sure how we get past these feelings, other than to do this and get it behind us. That's my attitude. As I get closer to the surgery, I might dread more than now, but the only way through it, is to do it.
I will be thinking about you. I almost decided on the House Clinic as well.
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Good luck, if you have an iPhone / smartphone bring it, I really liked being able to communicate with friends and family via facebook or text messages and if you have iOS6 you can put your phone on do not disturb and it won't beep or vibrate or anything that will annoy you or others in the hospital. Not sure what the rules are at HEI around phones but in my Hospital all the official literature said no phones in the ICU but when I got there all the nurses had them and told me it was fine.
I was prepared to be SSD but I wasn't prepared for how much my balance would be affected - everyone's results are different but be ready for some wobbly head and such - they got me out of bed the day after the surgery and it was difficult, four weeks out now and I'm heading back to work tomorrow, I followed the doctors advice and got out walking as much as I could during my recovery, using hiking poles for the first week. In my case the more I exercised my balance the better it got. I'm also doing vestibular rehab with physiotherapists that specialize in neurological issues.
As for your kids, you may find that they will find it 'empowering' for them to take care of superdad for a bit. My son, who's 17, really got a boost out of having to be the man of the house for a few weeks. It was amazing to see the transformation from me always having to tell him when to take out the trash or clean up to doing all that without being asked and volunteering to help out to make things easier for myself and my wife. There are good things that can come of bad situations!
Again good luck, it's stressful and scary, hope you have a great outcome.
Peter
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Thanks all for checking in.
Brandon, I am of the same mindset of you - we have to do it to get through it. I am moving into scared silly mode. Hoping to feel some peace when we get to LA and get settled.
Peter, My wife is the techie in my house and we will have an iPhone and iPad with us. Have tested Skype and looks like that works on the boys' iTouches at home. Amazing! Thanks for your good wishes and best wishes to you for what sounds like a very good outcome so far.
Today was a tough day as it was my last official day in the office. Had to tell 3 more co-workers who might notice that I am MIA for the rest of year, and then said 'see you soon' to those who previously knew. All of my co-workers have been great, I think I will actually miss them.
My wife has the rest of my week pretty packed as both boys' have doctor's appointments and one orthodontist appt. Life goes on even through all this chaos. Voting tomorrow, lunch with my parents on Wednesday, a massage on Thursday, and then taking the boys to see the new James Bond movie on Friday.
Seemed like this date was far away a few weeks ago. I am at peace with the decision, just wish I could get my anxiety under control.
Ken
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what is the size of your tumor. usually experts in gamma knife would only suggest surgery if the tumor is big. Met with NYU doctors today. I'm a candidate for both options and understand gamma knife has less risk of facial nerve damage/paralysis. That is my greatest fear. My tumor is 1.7 (I believe that's small). I decided to do another MRI in January to see if there has been any growth and then finalize by decision and schedule the treatment.
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Ken,
Wanted to wish you the best of luck and let you know that you are in my prayers. I will be praying for you especially on Tuesday. I had gamma knife three weeks ago. It is not something I wanted to do, but the day of the procedure I was at peace. I feel that was from all the prayers and support. May God give you that peace. I will be waiting to hear from you.
Cindy
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dt135 - We've kinda averaged all of the various measurements to come up with 2.7 cm. We spoke to 4 neurosurgeons and they all had slightly different measurements. So, I was on the end of the scale for radiosurgery.
Although, I had 2 very well regarded radio-surgeons tell me that they were comfortable treating me with gamma knife. It was the first and only radiation oncologist that we spoke with that said to me with my age, 43, and the size of my tumor, he would recommend I strongly consider microsurgery. Because my tumor was close to the brain stem he was concerned about radiation hitting outside of the tumor.
If my tumor was your size, I would absolutely be considering GK as my first choice.
Where are you located?
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Cindy,
Good to hear from you and I very sincerely appreciate your prayers.
I hope you are still feeling well after your trip to Dr. Sheehan.
You made the right choice for you and I know you will have a great result.
I actually had a peaceful day today which was nice because yesterday I was a bit of a wreck. Was able to work in the yard after voting. Between raking leaves and picking up twigs, I laid down and just looked at a nice blue sky.
Best wishes for a continued easy recovery from GK and a countdown to your first MRI showing that your tumor is losing its battle with the GK zap.
Ken
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Ken... I am three weeks out of translab at NYU. I had an evaluation by HOUSE as well. You will be in wonderful hands, I think staying the week extra to recuperate is a great idea.
I am happy I chose surgery...I was at peace with my decision once I made it. I felt very confident in my doctors. I found the first days after surgery very challenging, but it did get better.
Let your loved ones take care of you.
You are in all of our prayers.
Millie
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Ken
Praying for you. My surgery is on the same day .i hope the 13 th is our lucky number.
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Hi Lilly,
I'm glad it is not a Friday! Best of luck to you as well and I will certainly include you in my prayers. Thanks for including me in your prayers.
Today is my last day at home as we fly to LA tomorrow morning. A little depressing waking up this morning and thinking about 2 weeks away from home. But, we have Skype set up so I should be able to do video chats with my sons.
Coming down the home stretch.
Ken
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Glad it is not Friday too. Thank goodness for technology so that you can be visually with your sons. Look forward to hearing how your out come. I am going to see a kids movie with kids that I am very close too. Plan to have a nice week end. Time will fly for you and you will be home soon leaving behind An.
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My thoughts and prayers continue to be with you. Have you tried deep, slow abdominal breathing, or other relaxation exercises to help with anxiety?
Karen
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Surgery is done and my wife and I spent our first night back at Seton hall last night.
Have been very fortunate so far as I've had little dizziness and/or upset stomach, and have avoided all of the other complications that you don't want to get.
Patti (pattiken) was a day behind me in the surgery as was a young lady named Casey who I have not met, but my wife said she was doing well. Patti should released from st Vincent's today and being local to la she will head to all of the comforts of home.
Follow up doctor apps for Wednesday with drs. Brackmann and Stefan, and then with a continued uneventful recovery, a flight home on thanksgiving. Face is ok, but my trigeminal nerve is acting up, so although it may look ok to someone else it feels like it is swollen and unresponsive to me. Drs said I was a '1' after surgery and that is where I should end up. What an absolute miracle that would be.
Hope other new surgery and radio surgery veterans are well
Ken
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Ken, thanks for your update. It is wonderful to hear you are doing so well! I wish you and the other recent posties continued healing.
Karen
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Ken,
Have been praying for you every day. So glad to hear everything went well and you are doing so well. You will be home before you know it. Hope you have a great Thanksgiving. We have lots to be thankful for.
Cindy
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Great news, Ken. May your recovery continue to go well. Mil
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Good morning all,
Sleep has been a little tricky. Being on a different coast and with so many pills, my body doesn't seem sure what to do.
Had a good day of walking yesterday and even did a few laps around the small garden at the seton hall guest center. Perfect with 5 steps down and then 5 steps back up. Trigeminal nerve seems to be healing a bit as I feel more of my tongue, lip, and right side of my face then right after surgery. My right eye did decide to turn stubborn yesterday and disobey my commands to blink, but I think that is a little better this morning as well.
Two steps forward and one step back.
Still very pleased with progress to date and happy to be on the other side of surgery.
Thank you for all of your support. Praying for patience, progress everyday, and an uneventful 5 hour flight back to MD on Thursday.
Ken
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Your updates are great to read and my thoughts and prayers continue to be with you.
Karen
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Ken- my doctor told me my facial muscles on the left side (trans-lab, left side) would "wax and wane." My surgery was October 17th and I can say every day is a little better. Have a safe trip home on Thanksgiving. Mil
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Happy Thanksgiving to all. I'm grateful for you and this list.
Karen
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Glad to see the surgery went well. Here's a question. what if the doctor told you that you were a good candidate for both surgery and gamma knife and said to you if you were 20 I would recommend surgery but now that you are approaching 50, you should go the gamma knife route because gk has been around for 30 years and the long term effect although there are findings of some are still not clear. I say well although I'm approaching 50 everything about me is 20. It has steered me towards surgery but I'm still confused.
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d -
kind of confused by your post, but wanted to note that some docs - typically those who don't know a whole lot about radiation - think that it's dangerous for young people to have radiation. Lots of myths still exist.
Jan
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D,
I was in the same boat as you. Had 2 recommendations for surgery and 2 recommendations for GK.
To me it came down to being rid of the tumor. I will be the first to admit that I was very fearful of surgery. I am 43 with 2 young boys and all I could think was that I wouldn't be around post surgery or that I would be disabled to the point of not being able to be a good father. Of course, I knew that realistically either of those very poor outcomes were very unlikely to occur, but human nature doesn't follow logic.
You need to ask yourself what solution are you most comfortable with? It took me almost 3 months to answer that question and I know it is agonizingly hard to do, but you will do it. Once I made my decision my anxiety did not lessen, but I also didn't have any second thoughts and when I was waiting to be taken into surgery I was at peace and ready to have it done.
Please ask any questions as I am happy to give my $.02 plus I have a lot of time on my hands.
Happy Thanksgiving All,
Ken
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I'd just like to say that 50 is very young !!!!! :)
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Minor setback today as when my stitches were removed there was a small leak at the bottom of the incision.
Had to be re-stitched and re-pressure wrapped, and now sit tight for another 36 hours.
Bummer, but what can you do. Disappointed, but not discouraged.
Will meet with a doc first thing on Friday morning and as long as there is no sign of leaking should be cleared to fly.
For tonight and tomorrow, I have to try and remember how to get comfortable with my big, white hat.
Ken
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have you had any other complications. what size was your tumor? How long was the surgery? thinking of going to House Clinic for a fourth and probably final opinion. Much anxiety. I'm told its a six week recovery. Are you ok to fly prior to that?
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Sorry to hear about the complications. Wishing you healing and a safe journey home.
Karen
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Leak was fixed with a re-stitch and then another 48 hours wrapped up in the incredibly uncomfortable head bandages. One of the House Fellows came into the office on Friday am just for me, removed the wrap, declared no further leaking, and we got cleared for redeye flight home.
As advertised, the Drs at House were all excellent. Not only competent but compassionate as well.
My tumor was a little bigger than the 2.7 cm we has been quoted. Not sure exactly how big, but the docs mentioned to my wife after surgery that it was a little bigger than they thought. The surgery took 8 hours total.
Happy with recovery so far, although I am experiencing all of the common complaints (fatigue, dry eye, full headed feeling) plus a lot of numbness on the tumor side of my face.
Trying to take it easy. Got back home to MD yesterday and slept in my own bed last night for the first time in 2 weeks. Heaven!
You can't go wrong to at least talk to the people at House.
Ken
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Ken .....
Somehow I totally missed this thread of yours ..... :-[ So glad you had a good experience and result at House. They are the best (IMO)! Reading all of your posts just now brought back many pleasant memories of our (my husband's and mine) experience at the clinic, St. Vincent's, and Seton Hall. The lovely garden was such a wonderful place to take my daily walks.
My surgery was 18 months ago out there (I live in the eastern part of the country, as well) and I have had an uneventful recovery and am so glad I made the effort to go out there!
Thoughts and prayers ..... now! :-[ :-[
Clarice
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Ken...Glad to read you are finally cleared for home. I felt the same as you with those bandages...the first days are so difficult, and one cannot be comfortable. I kept rolling hand towels and gingerly putting them under the back of my neck...and your numbness, dry eye and fullheadedfeeling are all familiar too. I was told I might drive in two weeks but I can see, for me at least, I won't think about that yet...you are right when you say it is more or an eight week recovery (I think you wrote that- or maybe you wrote at least six weeks)...one thing I notice is I nap during the day and sleep more at night. I guess that is the body healing. Could barely sleep in the hospital(in Oct 17th, out the 21st NYU trans lab)
Praying for us.
Mil
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First day at home alone today as my wife was back at work and boys were at school. My dog was supposed to be watching me, but unbelievably she napped even more than I did.
Was able to walk outside in the yard a couple of times, probably 3/4 of a miles in total, and felt pretty good getting some fresh, cool, air.
Getting to the end of all the pills we got from the pharmacy. Hopefully, all of these pills are doing the trick.
Had to come home with a few stitches due to my minor CSF leak. Will work with Dr. Brackmann and my primary care doctor to get those out next week.
I just wish I would get the feeling back in the right side of my face. I'm making a mess at the kitchen table with food always stuck to me lips/face.
Good healing to all.
Ken
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It's great to receive your updates. I'll hope and pray the feeling begins to return soon.
Karen
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Hi Ken. Glad to hear all went well. It takes time but you will feel your face again. Probably not 100% like before but it does get better. Take things easy.
Mindy
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My face is a teensy teensy bit better every day, Ken. I attribute this to the repair/regrowth process...at least, I am better than I was. My head today feels less full. We can be hopeful. Mil
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Ken,
Just wondering how you are now that's it been a few weeks.
Brandon
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Yes, Ken...how are you doing? Are you feeling your face yet?
Here's how I am doing after trans-lab Oct 17th... About 50 per cent of my face is back...I think I was a 3 on the Brackman after surgery. I think I remember hearing that. People tell me I look much better but every morning I jump out of bed and look in the mirror and it seems like a very slow process to me...I actually had a tiny twitch and then a spasm in my face the other day...I think that might be growing and healing... When I am tired I think my smile gets a little more crooked. My eye is open fully and blinking more; the droop is much better-but my lid is not doing what it should yet. It doesn't have the life in it the other eyelid has...and my vision in the left eye is a little blurry-enough to make reading troublesome. I am using lots of eyedrops. My head still feels full . I am much better than I was right after surgery. I hope the improvement keeps going. I have been missing my hearing the last few days...sort of grieving it. The incision site-scalp and skin-are numb but the main part of my scalp has come back.
Does this sound familiar? How are you doing? Are you driving yet-I drove once but am not sure when I will do it again...hope you are doing well...Mil
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Hey Millie and Brandon,
Thanks for checking in and I am doing well. I am up to taking 3 and 1/2 mile walks and while my balance isn't perfect my missteps are fewer and fewer. It takes me about an hour to do that distance and I do my facial exercises and turn my head rapidly from side to side while I walk. Fortunately, I live in the country and rarely see a car go by me. If I lived in the city, I'm sure someone would have reported me for strange activity.
My face is less numb, but still much more numbness than prior to surgery. It feels best right when I wake up in the morning and gets progressively worse throughout the day. My right eye will blink when I focus on it and I am still relying on the drops to make sure it stays moist, but I think here has been a little improvement there as well. It does stay closed at night while i sleep, so that is good. My smile has improved slightly from a 50% smile to probably a 60% smile.
I have driven and don't have any problems with it, although I have purposely not driven during rush hour and have mainly stayed off the highway. But, i am able to check my blind spot and turn my head at stop signs without any dizziness or vertigo. I have an hour commute to work, so I am not looking forward to that.
I do plan to go back right after the 1st, but probably on a 50% basis for 2-3 weeks and then hopefully I will be able to make it through an entire day.
Overall, I am very happy with the way things are going. There have been challenges and days where I feel better and days where I feel worse, but for being 5 weeks post surgery, I think I am doing well. I certainly am very thankful for how I am doing.
I hope you both have great holidays with your families. I am so looking forward to watching my boys open presents this year. They are way too old to believe in Santa Claus, but still there is a special feeling this time of year.
Best wishes to all,
Ken
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Ken, I am glad you are doing well. I also had my surgery on 11/13 and plan to go back to teaching after the 1st. I am wondering why you will go back part-time.I teach elementary school, and I am paying for a sub the 1st day back because I want her to show me what the class has been doing. An added benefit will be if I get tired. Even though I was SSD prior to surgery, one of the few side effects I have is increased ringing and feeling of fullness on AN side. I noticed it was difficult to hear at the school. At home it is quiet, and I've been away from the classroom since before Thanksgiving; therefore, I am hoping to adjust quickly.
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J,
I am thinking of a p/t return because I have a long commute and by working p/t I can probably work my schedule to avoid the craziness of rush hour traffic, plus I still suffer from fatigue. Hopefully, this will help me ease back into my normal schedule. I work in a pretty noisy and faced past office environment so I know I am going to tire quickly.
It sounds like you are also doing well. I would imagine that it is tough for a teacher to go back p/t, but I would think that is a challenging job to return to so soon after surgery. Hopefully, your kids will understand, be on their best behavior, and help you ease back into your normal life.
Congrats on your good recovery. Keep it up!
Ken