Friday, February 27, 2009

2/27/09 Snowdrops !


Peggy and I spent yesterday in snow country, South Lewis right in the middle of the Tug Hill Plateau. The snow banks along the side of road are pretty impressive,8 to 10 feet high in many places and it felt like we were driving thru a tunnel in some spots. We had a few assembly programs at the school and it was wonderful to be able to do some music work again. This was the first music job I’ve been able to do since right before the surgery. My energy is slowly coming back, the voice is about 70% and food is easier to eat,so we are seeing definite progress every day!!

On Wednesday I went to the radiation center to do a mock up and a CT to make the three dimensional plot of my neck and head. They make a mask of your head from a soft mesh that when wet conforms to the shape of your face. The material dries hard and creates the mask that is then bolted to the board that you lay on to keep your head in place during the radiation treatments.There are also marks put on your chest and shoulders to line everything up with the radiation machine each time you come in for treatments. The folks who run the machines are really pleasant and do their best to accommodate any concerns that may come up. The treatments will be about 30 minutes each day for five days a week for the seven week period. The effects of the radiation are cumulative and will most likely not be too bad for the first two weeks, after that a lot of the side effects can begin to kick in. I will have about five hours with the Chemo people the first day of treatments to give the first Cisplatin injection and then over to the radiation folks for that treatment. We’re on track to start the treatments on March 9th. Next week I will meet with the speech pathologist on Monday. {I will meet with her a few times during the treatments to help with swallowing issues and any speech issues that might come up}. On Wednesday I’ll meet with the doctors that will be putting in the peg tube {feeding tube}the first week of treatments, and Friday we will have an actual simulation with the radiation machine to make sure that everything is lined up right and working properly. Let the games begin !!!

It is such a wonderful thing to be able to eat well again. Over the next 10 days I am going to do my best to enjoy food and put on a few pounds before we start radiation and chemo. I am well aware that eating will change dramatically for several months after finishing up treatments so right now I am savoring each bite. Peggy and I are also walking a mile to two miles every day and yesterday when we returned from our walk I spotted snow drops poking their heads out of the snow. Another sign that spring won’t be too far behind! Thanks you all so much for the wonderful posts, thoughts and notes coming our way each day, they are a constant source of strength and inspiration to Peggy and I during this journey. I look forward to the 7:00 pm vibe.

Saturday, February 21, 2009

2/21/09 Counting Down


Yesterday we met with the both the radiation oncologist and chemotherapy oncologist at the Clifton Springs Cancer facility, about an hour from home. The facility is really great and has the latest IMRT radiation that is needed to help minimize damage to surrounding tissue. All the staff seemed really wonderful and attentive to our needs. Dr. Albrecht met with us for over two hours and answered all of our questions. He made no bones about how miserable the treatments can be but he feels that we have a reasonably good chance of knocking this out. Because the main cancer site is actually at the base of my tongue, surgery to get rid of all of it is out of the question. This means we will have to have a little longer treatment schedule, seven weeks with radiation five days a week with chemotherapy {Cysplatin} once every three weeks. Next Friday I will be back at the radiation center doing a simulation where they will do a three dimensional mock-up of my head and neck and make the mask to protect the exterior parts of my face and neck that do not get radiation. We are looking at actually starting the treatments on or around March 9th. The first week of treatments they will put in the feeding tube to make sure that I can get enough nutrition over the seven weeks. The secretary checked with our insurance and we will have a $20.00 co pay for each radiation treatment. She told us about a $750 grant the hospital offers and we do qualify, so that is a wonderful thing and will most likely take care of most of the radiation co-pays!!

I received a message on the blog from Lee Rebalko who went through this treatment in Sept. of 07. He mentioned the possibility of pursuing proton radiation which is new and less destructive to surrounding tissue than the IMRT radiation can be. I did a lot of research on this and found out there are currently six facilities around the country that do proton radiation. I contacted three of them in Florida, Mass., and Indiana and I was able to fax them my specific biopsy information. All of them did get back to me and unfortunately, because the main site is the base of tongue, I am not a candidate for this technology, and all of them suggested that right now the best coarse of action is the IMRT radiation at a good facility that does head and neck cancers on a regular basis. So this makes the facility at Clifton Springs seem like a good choice. Thank you Lee for your insight and suggestions, they are greatly appreciated.

I am starting to feel a little stronger every day, solid soft foods are working and I hope that over the next two weeks I’ll be able to put on a few pounds and get a lot of strength back before we start radiation and chemo. There are a lot of unknowns going into treatment and I am going to just have to trust that everything will work out for the best. I am so aware of how important the positive attitude is and I hope we can maintain that throughout the whole process of treatment and recovery!! I am also aware of the power of our collective group vibes and that gives me great consolation. I am so thankful to all of you for your wonderful insights and loving support; it lifts us up more than any of you will ever know. I look forward to hearing from you and the 7:00 pm vibe. I am going to close this post with a wonderful quote that Lea Boylan shared in her comment.

Cancer is so limited
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot eat away peace
It cannot destroy confidence
It cannot kill friendship
It cannot shut out memories
It cannot silence courage
It cannot invade the soul
It cannot reduce eternal life
It cannot quench the spirit
It cannot lessen the power of the resurrection
Our greatest enemy is not disease, but despair.

Tuesday, February 17, 2009

Feb 17/09 Esperance! Hope!


This morning I awoke to the lovely sounds of the cardinals singing their spring song. The sun is shining, the days are getting longer, and there is the slightest hint of spring in the air!! In 1988, when I originally moved here to Red Creek and purchased the farm where we live today, I was taken by the name painted on the barn door: “The Esperance Fruit Farm.” Esperance is the French word for hope and since I have lived here it has become the name of my business, recording label, and publishing co. The word Esperance has been my guiding inspiration for many years and this morning I am feeling hopeful!!

After 12 days of pureed food, jello and lots of pudding, yesterday I was able to eat a normal meal (still soft food), and boy did it feel good!! Sleep is coming easier and I am hopeful that I will be able to gain back the weight I lost from the tonsillectomy and neck dissection, and maybe put a few pounds on before we start the treatments. I spoke with the nurse practitioner yesterday and she told me that next week we will be focusing on getting things ready to start treatment, hopefully the beginning of March. Most likely I will have a feeding tube put in before starting radiation, just in case it is needed. It is much easier to put in before the treatments start and we can just tape it to my stomach if it is not needed (that is certainly our goal!)They will make a cast of my face and neck to make a mask for radiation as to direct the beams and protect the tissue that is not to be radiated. On Friday I will get to meet with the radiation oncologist Dr. Albrecht and the chemotherapy oncologist Dr. Yirnic and we will forge ahead with a plan of action and begin preparing for the radiation and chemotherapy treatments.

But today we focus on esperance, hope, hope that spring cannot be far off after the long cold winter, hope that healing comes after surgery and hope in the cardinal's song telling us that the days are finally getting longer. I thank all of you for your wonderful loving notes and thoughts. They help Peggy and I more than you will ever know!! Listen for the cardinal’s song and I look forward to the 7:00 pm vibe.

Friday, February 13, 2009

2/13/09 Friday the 13th - "Patience"


Well this journey is certainly teaching me lessons that I must need to learn, for they come up over and over again. The main lesson right now is that of patience. We had to make two trips to the ENT surgeons this week and yesterday we were supposed to get biopsy results from the surgery, but the surgeon did not have them when we were there. Although he did take time to admire his stitching on my neck !! When Peggy came home last night she had a message on her answer machine from the ENT with a partial result of the biopsies. The tonsils were fine but the base of my tongue is positive for Squamous cell carcinoma. The ENT will be in Florida for the next two weeks so we’ll have to sort all of this out with the oncologists next week. I really think some one could make a fortune starting sensitivity classes for surgeons, they could use it!

Looking at these initial results we can find some good and some bad. The good thing is that they feel they have found the main cancer source and it will help to specialize the radiation treatment. The bad is the side effects for having to heavily radiate the base of the tongue. This can be a tricky thing and speech and swallowing can be affected dramatically. Dr Coniglio in Rochester told me that the base of the tongue is the second most common main source for cancer in the head and neck {Tonsils are the first.} I will find out a lot more when we meet with both the radiological and chemo therapy oncologists next Friday. I do hope to speak with one of them sometime later today. The thought of not being able to sing is a little scary but there has been a lot of progress made both in treatment and rehabilitation after treatment so we’ll take things one step at a time !

Well today is day nine without my tonsils and it has been a long week of pureed soft food, ibuprofen around the clock and lorcet at night to help with sleeping. There has not been much improvement with the tonsil pain and swallowing {I think we’re coming close to the point where that should get better!} but I have been able to sleep on my side the last few nights and that has helped a lot. The neck is healing nicely and I think before long that will be as good as new!! There is a lot to be said for healing in your own home, lots of DVD’s and time logged on the couch. Once again so many thanks to all of you for your continued support and wonderful notes both on the blog and through cards and emails that I have received. Your loving thoughts help Peggy and I more than I can ever tell you. And so many thanks for Peggy’s boundless patience and loving support, without her this would all be near impossible for me!! Have a wonderful Valentines day, hold those you love closely and appreciate this moment !! I look forward to the 7:00 pm vibe !

Monday, February 9, 2009

2/09/09 The comfort of friends

I am so happy to have been able to spend the weekend at home with family. It feels so go good to get out of the hospital. I must say the surgery feels a little bit like being hit by a truck and trying to keep any energy up is a real chore due to the difficulty with eating due to the tonsil surgery. We are doing a lot of experimenting with food and drugs to try to make eating possible. The ENT thinks that in another week it should be a lot easier to eat. The neck wounds seem to be healing well and today the exterior stitches were taken out of my neck! So for now lots of ice water, mighty soft food, lots of DVD’s on the couch and no pie for a while !!

I must say that both Peggy and I have been really impressed with the care we have received at the Newark Wayne hospital in Newark NY. Peggy met the president of the hospital setting up breakfast things for the ICU lounge on Thursday morning. I was impressed with that but we had just returned home on late Friday afternoon and the hospital called to let me know that they had just received some flowers for us right after we had been discharged. They had a nurse from the hospital deliver them to our house, 45 minutes away. We tried to tip her but she would hear nothing of it. Now that’s dedication ! There is a lot to be said for the personal touch in health care !

Our good friends and fellow musicians, John Kirk, Trish Miller and Dan and Nancy Berggren made the trip over from the Saratoga region yesterday to have a visit. It was so wonderful to see them and have a chance to a say hello, although right now I don’t have any voice. John brought a few pics and video greeting from the Galway concert on Saturday night that Peggy and I were scheduled to perform at but had to cancel due to the surgery. It just reminds me how thankful I am for this wonderful circle of friends surrounding us with so much love and concern. Thank you all so much !!


Thursday we will meet with the ENT and have the biopsy results from the neck surgery and tonsillectomy done last week. This will determine our radiation and chemo treatment course in the next few weeks. So I will keep you all posted as soon as we know. In the meantime I look forward to the 7.00 pm vibe.

Get Well Video From Galway NY

video

Here's a Get Well video from the cabin fever concert in Galway NY. this weekend. Pegggy and I were scheduled to play but had to cancel out of due to my surgery. Thanks everyone for the wishes and thanks to John Kirk for the video.

Saturday, February 7, 2009

2/07/09 There's no place like home !


You know that old saying “There's no place like home” well it sure rings true after a few days in the hospital. We were able to go home on Friday afternoon {a day early} surprisingly enough due to one of the nurses inadvertently pulling out my drain in my neck on Thursday night. When they saw that the neck had stopped draining they let us go ! As Peggy mentioned in her blog on Wednesday, the surgery did go well{ Thanks to all that high noon vibing that was going on!}, four hours and thirty lymph nodes later when they brought me to ICU, they put me out again and we went back in the operating room to put in a new drain. Right now I am happy to be home but looking forward to the tonsillectomy healing up, eating is a real chore and hopefully in a week or so that will will begin to get better. But for now the old vicadin will have to help us out !!

I can’t thank you enough for all the love sent my way on Wednesday, it really speaks volumes to me and makes me think that if we all put our minds together collectively there is nothing that we can’t get thru !! I will write more later when I feel up to it. Just wanted to send out a really big thank you and let you know that we are home and in one piece !!

Thursday, February 5, 2009

More good news

Dan is better and is being moved out of ICU at right about vibe time! They kept him in bed all day (a tall order) to keep him from jostling his neck but now they feel its safe for him to stand up. And that makes it easier to pee. I never knew. Anyway, all systems are a go and if this keeps up he may go home on Saturday. The surgeon is very pleased with his progress and said they played Shenandoah Falls all day in his office. See y'all at 7. Gratefully, Peggy

Wednesday, February 4, 2009

SU beats WV! and Dan's awake!

First thing Dan did upon waking was give a right-hand thumbs up! So there was no nerve damage. He's in intensive care where the drain tube is being closely monitored. It's a good thing. It was clogged and there was some swelling on the side of his neck. But it was quickly caught by Sally, an ICU nurse, who alerted the surgeon before he left the hospital. They had to take Dan back into surgery and reinstall the drain. Dr. Simmons said its the first time in 25 years of operating that it has happened. So now Dan's back in the room and asked me to get online and find out how Syracuse is playing tonight. Who knew ice chips could be such a hit? We won't hear biopsy news for about a week, but the surgery was successful and Dan's healing even as we speak. He whispered to me to tell you all "Thanks." I ditto that.

Out of Surgery

Peggy, here. Dan is out of surgery and it went well. He is in recovery now. I can't see him till he's moved to Intensive Care. It was a long surgery - 4 hours but my folks, John Ohara, Faith Binder and Barb Wilson were here with me all afternoon. I'll post again after Dan wakes up and I've seen him. Thanks for the noon vibe. It felt like an earthquake of love!

Tuesday, February 3, 2009

Feb. 3/2009 High Noon Vibe Tomorrow


This all started at the end of November with a doctor’s visit and a CT scan suspecting there was cancer present. Now over two months later, scans up the gumpstump, numerous doctors' visits and countless hours of research, we are finally ready to start the first part of our treatment, the surgical component. Tomorrow morning at Newark Wayne hospital in Newark, NY, I’ll have surgery to remove both of my tonsils and a modified neck dissection to remove as many lymph nodes as possible without removing the main neck muscle. The lymph nodes will in turn be biopsied to see if there is any cancer present. It turns out I will most likely be in the hospital 3 to 4 days with the first two days in intensive care to monitor the neck and make sure the drains are doing their job and monitor any complications that may happen. I have been extremely fortunate in my 52 years on the planet to have never had to spend the night in the hospital for surgery, so this will be a whole new experience!

Today I met with an ENT, Dr. John Coniglio in Rochester for a second opinion. He basically just reaffirmed what we are doing and had a few good suggestions about the surgery that he will pass on to our ENT. John knows Dr.Simmons and says he is a good head and neck surgeon and that we are in good hands!! So sometimes that second opinion just helps to put your mind at ease.

Once again words can’t even come close to describing how moved I am by all your wonderful notes and thoughts, and the ever growing 7:00 pm vibe time!! I would make a request that tomorrow {Wednesday 2/4}, we add a group vibe at 12:00 noon, when the surgery is scheduled to take place. It can be our high noon vibe. With all of your thoughts and prayers the surgery will be smooth and successful. Peggy will try to add a post on Wednesday night or Thursday to let you all know how things work out. I’ll look for you tomorrow at noon.