Slow and Steady Progress

Things have been progressing nicely. The progress is slow but I'll take it . The lower part of my leg incision has been slow to heal so the head nurse at the plastic surgeons office has me trying  a honey based bandage called medi-honey. It uses active leptosperum honey from New Zealand and is supposed to be very healing. It seems to be working pretty well, and on hot days the bees seem to enjoy it too !!  I also have been seeing a physical therapist for walking and that has made a big difference. I am walking better, still not great distances but a little farther everyday ! The swelling on my face has gone down quite a bit and now it seems that the only real swelling is from the flap itself . Eating is still a bit of a challenge but I continue to be able to eat softer foods on the left side of my mouth. And yes our new motto is " have blender will travel". The doctors feel that I really will need 8 months to a year for everything to get back to where it needs to get.

I have been performing, and will be traveling quite a bit this summer doing concerts and workshops. There are a few adjustments but overall everything is going quite well. Singing is still a bit of a challenge because of the swelling in my tongue but I am finding ways of making it happen. I am also really pleased that my energy is starting to come back and that makes a big difference. So overall as the saying goes "slow and steady wins the race". I am so thankful to be able to out working and playing music this summer. I thank you for your kind thoughts and encouragement and I will continue to post more as thing improve. Hope to see some of you at performances this summer and keep those good healing vibes coming !  

Doctors Chime In

We got to see both of the Doctors at the beginning of the week, and both were were very pleased with what they are seeing . Dr. Vega { The plastic Surgeon }, changed the kind of dressing we have on my leg to  a tighter dressing and a tightly wound ACE . But the biggest change for my leg is we are no longer using the boot and that is a pleasant change. I can use an older sneaker with no laces and an older slipper. When I am not on my leg they want me to keep the leg elevated, so we are doing that as much as possible. The leg is still  quite sore but I am walking slowly with a cane and do look forward to the leg improving !! The Plastic surgeons are very pleased with the the way the bones and tissue flap are continuing to improve !

The PA for Dr. Coniglio was also really pleased with the progress with the flap and the bone graphs ! She told me that it will most likely be several months before the swelling in my face goes down , so what you see is what you get. She also thought that I was doing really great and feels like the outcome will be really great !! She also feels that the recovery might take a bit longer than the doctors had stated but not to worry, its all worth the wait !! Right now I am still on a liquid diet and trying to take in as many calories as possible. I have lost weight but there will be plenty of time to put that back on !!

Still playing gigs by ear, right now I just don't have the energy to travel and perform , so Peggy will have to hold forth on Sunday a the Rogers environmental Center. But I will continue to keep everyone posted on our progress, and evaluate performances as the recovery progresses. Right now my voice is still a little weak but that will change when the trach finally heals which should be in a few weeks. I am so thank full for all of your kind thoughts and concerns and so thank full for Peggy , she has been absolutely wonderful !! But the best thing is to be home and be able to spend a little time outside in this great spring weather, it sure does help the overall attitude and healing !! I look forward to hearing from you and seeing you before too long !!!

Free At Last !!!

Well  today is a day for celebration, after 8 nights at Highland hospital {4 nights in ICU }, I was able to go home today. Let me tell you there is a not a sweeter feeling than walking { in my case hobbling ! } into your home after such an ordeal. The entire staff at highland was unbelievable to Peggy and I and did a great job of communication even when I was drawing everything out on the white board. I did come home with a walker and over the next few weeks my leg should be getting stronger. I will have to have visiting Nurses come to the house everyday to change the dressing on my leg due to some unexpected edema issues that have popped up, and also to change the trach dressing also. But the best news is that the the new bones and tissue in my jaw are alive and getting stronger every day.

The next few weeks and months will be challenging to say the least but we are off on the right step and tonight we can sleep in our bed{ down stairs until we can once again conquer stairs } and be wrapped around a cloak of warmth that is our lovely home . I have included a pic of leaving the hospital with Alexa  our Hospital assistant. As you can see my face is extremely swollen and will be for a while but I can honestly say "First Day With My New Face". Thanks again for all the thoughts and support, I'll keep you posted on progress as we move along, I could not do this without your support . To Dr Coniglilio and Dr Vega I can't thank you enough for giving me this miraculous second chance. And to Peggy who continues be my rock through all of our challenges, she very well may have to be anointed sainthood after this is all over..And to chocolate pudding, milk shakes and smoothies that always taste better from home !!!

A Day of Firsts

Well today is a day of firsts at the Highland Hospital. It has been 8 days since my surgery and a whole lot has gone in to try to cope. As our friend Barbara would say " Hang on Sloopy!"

I have gone from a few days of  wicked confusion  from lots of morphine to trying  to communicate without without my voice, to trying to a avoid tube feeding at all costs.

But today there is a lot to celebrate in Mudville. This morning my trach tube was removed and shortly after the feeding tube was removed from my nose and  I am again able to drink liquids again . This seemed like an  impossibility last week. I can actually communicate with the outer world again!! We are hoping to go home either tomorrow or Wednesday but the sooner would certainly be the best. All the nurses have been fantastic even when I swear that I am at a hospital in Oswego!! And yes, sleep has not been easy to come by which made things a little tricky.  We can see our time here slowly coming to an end and it sure will be great to spend a night at home!!!

This surgery is every bit as challenging as it is amazing. At some point a little further along we'll post a pic of this face. Oh my, not winning any beauty awards that's for sure. But today is a good day for celebrating the little things we take for granted like talking and eating. Here's to many more good days and my oh so patient wife and  and kind friends who have passed on the strength and endurance to fight yet another day. You will never know how much it all means!

As you can see from the lack of  italics, Dan is back to posting himself, but I will admit to doing some hefty editing. I asked Dan if he thinks I missed my calling and should have become a nurse.  He said, "Hell no!"

ABP - Always be positive!

I have many positive events to report!  Yesterday Dan had a few visitors while waiting to be taken up to the 6th floor.  John Ohara stopped by and brought a children's book called Dem Bones which his artist wife, Donna, had embellished with a new section of bone in the jaw.  Hannah Gibbons, former Sagamore intern, visited with some perky pink tulips and her equally perky smile, and Pat Wheelhouse came with a lap dulcimer and new words she  wrote to Wild Mountain Thyme, which she shared as soon as they got Dan tucked in in his new room.  Being in a new setting was a little confusing for Dan at first; he thought he'd been taken to Oswego!  Now that he is settled in and had more than a few minutes of sleep at a time he's  gaining strength.  This morning they gave him a smaller trach tube which has a plug so they're weaning him off of it.  The drainage tube was removed from his neck, still one in his leg, and they took out the catheter. Best news of the day is that he was able to turn the tap back. on!  Woohoo!  He's still on track to go home on Monday.  Jack wants to know if Dan will be able to throw a frisbee even though he's on crutches?

What a difference a say makes!

It's a new day.  I got seven solid hours of sleep in a bed and a hot shower.  Thanks Pat and Rob!  Dan got excellent care through the night from a nurse named Tricia.  His swelling is down today out of his right eye.  Despite both a feeding tube and a trach tube, he is talking with a froggy little voice.  Dan is determined to communicate ALL of his thoughts and intentions. He writes complete sentences on his little white board (better than some students) and is not well pleased when we finish his sentences for him.  I think the ICU nurses will not miss us too much when he gets moved today.  They promise it will happen today.  The surgeons are still very pleased with Dan's progress. Thanks for your comments here, emails, texts and the like.  We are wealthy in friends.

Long Day

Today patience was top of the list for requirements.  Yesterday, a nurse took out Dan's catheter and today it had to be put back in. The swelling on the right side of his face has just about closed his right eye.  They thought he would be sent to a room on the 6th floor today but so far, no dice.  The physical therapist did get him up and he took a few hops, careful not to put weight on the left leg.  He's been up sitting in a chair all afternoon and is fairly comfortable there.  He was given a morphine pump for pain and does not hit the button as soon as it lights up.  Our friend Pat Wheelhouse has been here each day, God bless her!  Today she brought an interesting instrument half lap dulcimer, half banjo.  What fun; Dan picked out a tune right on the spot.  I am going over to her house on the lake tonight to sleep in a bed for a while.  I think I am reaching the point of diminishing returns.  Their coffee shop has a roast called Fire and Ice that's delish, but caffeine can only take you just so far.  I hate to leave Dan while he can't talk, but I'll make sure he's in good hands first. 

New Day

Well I thought I'd use a different font today to remind you that it's me and not Dan posting...yet!  We found out more about the condition of his jaw from the surgeon this morning.  Turns out, his jawbone was actually fractured.  No wonder he was in so much pain?!  There was an infection in part of the jaw but they took out that section and had two good solid parts to which they could connect the new piece, kind of like legos.  Today and tonight will be the worst of the pain and swelling but they gave him a pump so he can press it when the pain is too bad.  They have him up sitting in a chair now and he took a couple steps, keeping weight off the defibularized leg.  Jamie Savage said now his voice will be fibulous!  Since he has the trach tube in he can't talk, but he's scribbling up a storm. I try to answer their questions for him but he'll have none of it.  So we need not worry about Mr. Duggan losing his personality during this exercise!

Good news!  Dan is through surgery and it went very well.  The surgeons began at about 8:00 AM and finished at just about 4:00 PM.  Both the head and neck surgeon and the plastic surgeon came out to talk to me afterward and they gave me two pieces of good news.  First off, they did not need to split his lower lip and chin.  Secondly, they were able to use blood vessels directly below his jaw on the right side.  There was the possibility of them needing to go to the other side of his neck.  So there are two places where they drew in pen but did not have to cut.  Hallelujah!  They did install a trach tube due to the swelling of his throat.  He woke up and immediately tried to start talking!  No, not Dan!  The other good thing is they did not need to use a skin graft on his leg.  He has more pain there than anywhere else, but they are doing their best to manage it.  The ICU nurse is wonderful, competent and sweet.  Her name is Ping.  Dan's already buttering up the nurses even though he can't talk!  We're both incredibly grateful to each of you and all of you for your prayers and good wishes.  We know we are never alone.

Here We Go !!

   Well here we go, hopefully we have dotted all the I’s and crossed the T’s to get ready for this surgery. This week we got to speak in depth with both the ENT surgeon {Dr. John Coniglio }, and the Plastic Surgeon { Dr Vega } about the operation and how everything will work . Both crews took plenty of time to answer our questions and it seems like everything is in place. Both crews will work simultaneously and it looks like the surgery should take around 8 hours. We have the first surgery spot of the day on Monday, {7.30 AM } and will need to be at the hospital around 6.00 AM, so put that good vibe out in the morning !  

     This week Peg and I have been working hard to try to finish up the recording part of a new CD we have been working on. I am not sure how long it will be before I am able to sing & play again so there has been a bit of a sense of urgency. One of the songs we have been working on is a song I wrote about my cancer experience; “You Are What You Dream”. This song has taken on a whole new relevance to me going into the surgery. I put together a mix and have put it up on Box .net so you can listen or even download the song if you would like. Here is the link.

https://www.box.com/s/qilh9wzc10k0a3xfihgt

    Thanks again for all your kind words and support, I can’t tell you how much it means to Peggy and I. Peg will try to post to the blog on Monday night after the surgery, and I will try to post a little while I am in the hospital next week. Here’s to strong hearts, talented doctors, a successful day in the OR, and a swift recovery !    

Osteoradionecrosis

   It has been quite a while since I have made an entry to the blog, and that is a really good thing. Over the last few years I have had several PT scans all showing some normal activity but nothing detecting any return of the cancer at the base of my tongue. But a subsequent issue has come up due to the cancer treatments. Osteoradionecrosis is a condition in which there is a significant weakening of bone structure due to high levels of radiation. This has been an ongoing problem but reached a critical point a few weeks ago.
       In May of 2012 an impacted wisdom tooth had to be removed and it was determined that antibiotics would take care of any of the infection. The tissue looked like it was healing OK but unfortunately the infection has remained in my bone for almost a year. Infections are nearly impossible to eradicate in highly irradiated tissue and bone structure. Over the course of last year, the infection would cause swelling and a great deal of pain and a round of antibiotics would calm the infection down but not get rid of it. This all reached a critical point a few weeks ago when there was another outbreak from the infection. A visit to my oncologist and a new X-ray showed a dramatic loss of bone structure in my jaw both from osteoradionecrosis and the infection. The diagnosis is stage three osteoradionecrosis.
         I was referred to Dr. John Coniglio in Rochester and he concurred that the situation has reach a critical stage and will be doing surgery on April 15th at Highland hospital in Rochester to try to improve the situation. The surgery is called a mandible resection, and they will take bone and tissue material from my left fibula and cut out the bad jaw tissue and bone from my jaw and replace them with the good healthy tissue and bone. The surgery is complex and will entail a 7-10 day hospital stay with 6 to 8 weeks recovery but the prognosis is good for a full recovery! The team of doctors perform this surgery 4 to 5 times a month and have really perfected it. Unfortunately if I wait any longer the infection could cause a life threatening situation. This surgery is the best chance I have to leading a healthy life with the post radiation jaw I now have!
          One thing that is a little alarming is how many head and neck cancer survivors are developing osteoradionecrosis ; somewhere around 15%. Dr. Coniglio mentioned that this is because many cancer patients choose not to have surgery to remove cancerous lymph nodes and therefore the radiation levels are higher to take care of everything. In my case I did have surgery but the primary site was the base of my tongue which is a difficult area to remove a tumor so higher radiation levels were required.
         We are keeping a positive outlook about the surgery and will be really happy when it is over. Peggy will post an entry after the surgery to let you know how things are progressing. Since I will have a trach tube for breathing for the first week, it will be impossible to talk with anyone but I will be able to send notes. As always I so appreciate all the positive thoughts that are coming our way from so many of you. It means more than you know. Here’s to a bright Spring !!