Saturday, May 30, 2009

5/30/09 Slow and steady wins the race !!

Lately this has become my motto; “Slow and steady wins the race.” Everyday there is a little progress and yet there is a lot of progress to be made on many fronts. Eating is still quite difficult due to the soreness of my throat, but every day I am managing to eat some soft and liquid food. Also the peg tube is taking up the slack and helping to try to equalize everything out! Gaining weight does not to seem to be happening yet, but once the throat levels out, I think all of that will come easier. I do at moments feel a bit like my old self, and when that happens it is a wonderful thing for as long as it lasts. Anything that gives you a sense of normalcy is a great thing.

It was wonderful to be at Sagamore over the Memorial Day weekend. We had a wonderful concert for the volunteers, and many of them were old friends so it was almost like a homecoming. When I get to play music the sensations are overwhelming; it feels like a miracle that after all we’ve been through the music can still flow quite freely. My voice is sill not ready for primetime singing but I am hoping that this summer it will be fine. I do get a bit tired and overwhelmed at times but overall I can begin to see some positive changes. I am jut looking forward to my throat and the mucus leveling out. This week Peggy and I also got to do some work in the studio recording a song that Peg wrote for Winter’s wedding and a march that I wrote for the wedding. Both came out great and it is wonderful to be able to work at the console again. I look forward to many long hours recording and mixing in the future. Peg's daughter Winter is visiting and last night we made my first trip out to a restaurant since most of this started. Our friends Bonnie and H own the Pleasant Beach in Fair Haven and it was so nice to see them and their whole staff. Eating out is a real challenge and it’s hard to find food that will actually go down smoothly but they managed to help me out. It was a wonderful step and I look forward to many more “firsts” as the healing continues. Slow and steady wins the race!

We had an appointment with the ENT surgeon this week. It was the first time I had seen him since having surgery in Feb. He seems to feel that I am doing relatively well and just repeated what all of the doctors have told us. This is a slow process and learn to live in the moment and appreciate any little bit of change that can happen. I will need to see him once a month for a year to keep track of my throat and tongue area and make sure things stay healed. When we asked about what might be safe to eat at this point he said we use the stick test. If you can throw it against the wall and it sticks it should be OK for me to try to eat it. Seems a bit broad to me but if it will work we’ll try it !!

Once again, as we slowly go through this healing phase we are so thankful for all of your wonderful thoughts, concerns and generosity. This entire thing has been so humbling to me and I am forever grateful. As you ponder all you have to do in your busy world, don’t forget to take some time and try to live in the moment, it really is all we have right now! Thanks so much again and I’ll look for everyone around 7:00 pm.

Saturday, May 23, 2009

5/22/09 An Epiglottis is a terrible thing to waste!

As many of you know, the epiglottis is a flap of tissue that sits at the base of the tongue and keeps food from going into the trachea, or windpipe, during swallowing. During treatment for head and neck cancer, especially cancer at the base of tongue the epiglottis can easily become damaged from the intensity of the radiation treatments. This can result in long rehabilitation times before patients can eat or even attempt to eat. With this on our minds I had a barium swallow test done earlier this week with my speech pathologist to see if everything was working properly. Even though there is still a great deal of pain swallowing, my epiglottis is doing what it is supposed to. This is really good news! I was cleared to try eating liquids and some soft food. So we have had some soup, yogurt, pasta, eggs etc. this week. Even though the throat is still sore when swallowing it is really nice to start supplementing the diet with some real food besides what I put in the peg tube!! My hope is that in time the throat will become more comfortable with eating and it will be easier to regain the weight I need. The old taste buds still aren’t sure what’s going in there but it is hoped that will change in time too!!

I saw both the chemo and radiation oncologists this week and they are really pleased with my progress. I don’t see the chemo oncologist for a month now and I no longer will need to go and get extra fluids. I also will not need to see the radiation oncologist for a month. We will have a pet scan on June 22nd to see how everything looks and I will be able to speak with the doc that day about the results, and that is really great! The mucus and dry mouth are still an issue but seems to be getting a little bit better every day. So overall very good news this week!

Peggy and I are playing at great Camp Sagamore on Saturday night to do a little concert for the clean up crew that volunteers to come and help open the place for the summer. It is really my first overnight out since January and we are both really excited about it! I’ll bring all the peg tube stuff but also see what I can try during mealtime that might be soft enough to do the trick. I’m not singing yet but it will be wonderful to play! So we are feeling more hopeful by the day. Thanks so much again for all your continued support and wonderful vibes, it means so much to Peggy and I. I hope that you all have a wonderful memorial day weekend and we’ll look for you around 7:00 pm. Be thankful for that epiglottis you have that keeps your food headed in the right direction. Where would you be without it ?

Saturday, May 16, 2009

5/16/09 Baby Steps

We are now three weeks out from chemo and radiation, and things are moving ever so slowly but there are a few promising signs. I went to see the speech pathologist at Clifton Springs and she helped me to swallow some water and some tea. She feels that for three weeks out things are actually going pretty well. I will meet with her again on Monday and they are going to do what’s called a barium swallow, where they actually take X-ray pictures of you swallowing to make sure that there are not any abnormalities. If everything checks out OK she’ll put a plan together to have me start on a liquid diet and hopefully work our way to more solids in time. In the meantime time I have been trying to have a cup of cool herbal tea each day and one day I even had a half a cup of egg drop soup! It still hurts to swallow and feels extremely foreign but I’m working hard to make it happen. I also have been doing 3 to 4 tube feedings a day to try to maintain my current weight until I can once again eat to put weight back on. The mucus is still an enormous issue and has not gotten any better yet, but I know in time it will. Peggy and I did an elementary school assembly close to home in Volney NY. yesterday. I really cannot sing but it was wonderful to play and be in the groove. I had to clear stuff out of my throat between each song, but it was doable. It was really exhausting but felt good to be out doing some work. It made me feel hopeful for performing in the future! In general my energy level is beginning to come up a little bit, and every once in a while I actually get a hint of normality, and I hope those will become more frequent as we move along thru Spring and Summer.

I really want to thank everyone who helped out to make the benefit for Peggy and I, held at Blueseed studio last night. We were not able to attend but from what I understand it was sold out and was a really wonderful time. Many thanks to Carol, Dan, Roy, Jamie, Lisa, Klaus, Fran and all the volunteers and concert goers who made the event such a success !! A big Thank you to all of you, we are forever grateful.

Spring is truly in the air, the days are longer, the birds are singing, the lilacs are all in bloom and the grass is growing faster than we can keep up with. Spring of coarse is the season of hope, and with these lovely spring days I remain hopeful with each passing day. We are as always so grateful to all of you for your continued support and encouragement as we continue with this healing process. Thanks to all of you for all you do and I so look forward to seeing you at 7:00.

Friday, May 8, 2009

5/08/09 Not by the hair on my Chiny, Chin, Chin !

There are lots of casualties from radiation and chemotherapy. Some folks loose their hair and some have no problems at all with hair loss and nausea. Everybody is different and our bodies all react in different ways. My casualty is my beard. The IMRT radiation machine was so close to my face that it took most of my beard with it! After 25 years of living as a fuzzy face, I shaved the remnants of my beard {or what was left of it} this week. I still do have a nice thick mustache so that is a fun thing! Peggy had never seen my chin and she seems happy to know that I actually have one!! In fact many of you may have never seen my chin either so I have put up the jpg so you can see for yourself. I am sad to loose the beard but in a lot of ways it kind of signals a new beginning.

This week we have been in kind of a holding pattern from last week. I am doing my best to hold my weight with the peg tube and swallowing has not improved so eating and drinking are still not possible, and I still have enough mucus to float a boat! On the positive side the clinic has cut my hydration days down to two times a week down from three times a week last week, and they have also cut the amount of hydration I get in half. Peggy tells me she can see improvement everyday, I still don’t feel a lot better but I am hopeful that in the next few weeks things will begin to pickup quite a bit. Baby steps. We have had several friends come to visit this week and that is always wonderful. And now that spring is officially here, I am really pleased to let you know that I actually mowed the lawn with my tractor this week. I know it’s only sitting on a tractor but it is a wonderful thing. Anything that I can do that gives me a sense of normality is a big step forward, even mowing the lawn with the tractor.

Peggy and I have been so humbled by your generosity, thoughts, insights and concerns. As a person not used to being on this end,I can honestly tell you that words can’t do justice to express our thanks. You really lift us up when we need it and give us wonderful perspective that sometimes either of us may be able to see. From the bottom of hearts we send you our sincere thanks and appreciation to all of you, this amazing extended family. Keep those thoughts coming our way and I’ll look forward to seeing all of you at 7:00 PM.

Saturday, May 2, 2009

5/02/09 A Time for Patience

This first full week after treatments has been one of relief, hope and expectations of change. The radiation is still working throughout my mouth and head and continues to cause a great deal of discomfort. Besides the pain in my throat the most frustrating thing is the mucus that is coating most of my mouth. It has become very difficult to get rid of and is a by product of the tissue being burned from the radiation. Unfortunately the salivary glands are on vacation right now so they are not helping to thin things out. I did go to Clifton Springs three days this week, {I drove my self, thank you very much!} for hydration and that seems to help a bit. I most likely will do three days again this week to try to keep things as hydrated as possible! Swallowing and eating are still not possible so everything is still going thru the Peg tube. I am really missing eating, especially the social aspect and I so look forward to the day when I can once again sit down with my wife and enjoy a good meal together. Change will come, but it will come slowly and I must be patient and allow the change to slowly come to me. I have noticed a few times this week a little pick up in energy but in general terms my energy level is still pretty low but once again it should slowly pick up with time.

The lesson here for me is a life long issue I have always struggled with. Patience! I know that change will come in time and slowly, but I need to be as patient as possible. I am thankful for each day and watch change slowly happen through the miracle of spring. It is so wonderful to see all the flowers, trees and shrubs opening up and showing off their lovely spring coats. Everyday there is something new to celebrate. Just like spring, I look forward to my body becoming stronger and stronger with each passing week and month and my mind accepting the change that may come. And I look forward to working on becoming the most patient person I can possibly be!! I once again thank all of you for your generosity, love, support, and overall kindness. I thank my lucky stars every day for the wonderful support network that has developed. It shows me each day what an amazing circle of friends we all have. You really lift me up when I need it. I look forward to seeing you all at 7:00.