Saturday, April 25, 2009
Well after four months, three surgeries, 35 radiation treatments, 2 infusion chemotherapy sessions, and nearly 30 pounds lighter I have officially ended the treatment part of this process. It was a wonderful mental milestone to reach yesterday. Unfortunately my body has been pretty well battered but my spirit seems to be able to see past all of this. Right now I cannot swallow at all so all fluids, pills and feeding have to come through the peg tube. The radiation oncologist explained that the radiation will still continue to work in my mouth for at least two weeks, so as soon as the pain and swelling start to subside I should be able to start drinking some fluids and trying softer foods. Due to the nature of treatments my taste buds are pretty fried, so for the first little while eating will become quite a chore! It is impossible to try to tie down a timetable but as soon as I can hold my weight by just eating on my own they will remove the peg tube, maybe 1.5 to 2 months. There are also side effects that will hang around for a while. The salivary glands will hopefully work a little better in several months and I’ll look forward to a let up with the constant mucus. I will be going to Clifton Springs three days next week and possible the following week for intravenous hydration. But today is a day to celebrate! We’ve made it through the seven week treatment in decent condition. I’ll hold on to these triumphs as we go through the weeks and months ahead!
A very special thank you goes out to Mary Durocher and her family and Kitty Dates and her family for all the work they put in to make the spaghetti supper such a success. They served hundreds of meals and raised a great deal of money for Peggy and I. We can’t tell you how much we appreciate the effort and how humbled we are by the support of our local community. Thanks so much again to all who attended and made the event such a wonderful success!
I am well aware of how slowly the healing phase of this process can be and I know that I will need to have a lot of patience as we proceed with the healing and begin to understand how all the changes will effect my life. I am doing my best to let go of expectations and I will do my best to celebrate each little milestone. Right now I really miss being able to eat and drink by mouth and I look forward to sharing a meal with my lovely wife sometime as we move on! But today is for celebrating, reaching a milestone that seemed so distant two month ago!! Keep the good vibes coming; this wonderful community of friends helps Peggy and I more than you will ever know. As I mentioned in one of my last posts, yesterday was Arbor Day and I have included a jpg of the Oak tree that we planted yesterday afternoon. I look forward to many cancer free years being marked by the growth of this mighty Oak!! See you all at 7:00!
Wednesday, April 22, 2009
On Friday evening April 24th my good friends Mary Durocher and Kitty Dates are having a Spaghetti supper here in Red Creek to benefit Peggy and I. It will be held at the Methodist church on Church St. in Red Creek between the hours of 4:30-7:00 PM. So if you happen to be up in the area or would like to make a nice country drive I know that Mary and Kitty would love to see you and they will treat you right! If you would like more information contact Mary Durocher at 315-947-6096.
Sunday, April 19, 2009
This week has been all about holding on. Every day is one more day off the calendar and everyday things get a little more difficult. It has become more difficult to swallow any pills, so more are going into the peg tube. The phlegm has become so thick that it is really tough to deal with. We’re doing the usual things to try to thin it out but right now the salivary glands are not working well due to the radiation, so it just can’t keep up with it and thin it out. In fact it has been making it difficult to sleep at night. Right now morphine is the only help with the mouth sores and sleeping. Also the next few weeks we'll be going in for extra hydration several times. So this week is under our belt, and I imagine that our last week will be the most difficult to deal with. I am really looking forward to having the treatments be finished so we can start the healing phase of this process. The radiation will continue to do its thing for two weeks after we are done. Once things begin to heal up some in my mouth, I should be able to try to start eating again, but it is a tricky process and so much depends on how the healing goes. I need to be able to re-learn to eat, and once I can maintain my weight from eating the peg tube will be removed, most likely 1.5 to 2 months. But before we can even start the healing process there is this week to get through, one day at a time.
I had a really nice conversation with old friend and fellow head and neck cancer compatriot, James Durst. James' situation is very similar to mine, the main site is the base of tongue and he had 33 radiation treatments with infusion chemotherapy. James finished his treatments up this week and it was wonderful to swap notes. James is a great singer and guitar player and is currently working with our good friend Mark Murphy, on a wonderful program called “The Work of the Weavers.” Congratulations to James who is now starting the long healing journey after this tough treatment. It seems that he came out in one piece and I wish him all the best. I’m sure we will be swapping notes again before too long.
Yesterday our good friend Eric Ludwig and his wife Joan, along with Tom Hodgson came by for the day and we rented a wood splitter from our local Agway store. Along with Peggy they got all the wood split and stacked from the three maple trees that were taken down in our yard last fall!! Thanks so much guys, what a wonderful job!!
Well once again I am totally blown away by all of your generosity, kindness, insight, and just plain hopefulness during these days of holding on tight. Your support means more than any of you will ever know. Last week to go, keep those vibes coming strong!! I’ll look for all of you at 7:00 pm.
Saturday, April 11, 2009
Well it seems like we can finally see a glimpse of the light at the end of tunnel. Every week becomes a little more difficult and the side effects of both the chemotherapy and the radiation are more defined. To date I have lost around 25 lbs and all nourishment is now taken in through the peg tube. Peggy makes some great juices, carrot with apple to put in the tube, it really helps a lot. The canned nutrition is bland and hard to hold down with the nausea from the chemo. I do my best to keep things down but it is pretty difficult. I am getting extra fluids intravenously about every other day at the clinic. Due to the weight loss we had to make a new mask and fine tune the radiation plan. The new plan was started on Friday.
After several conversations with oncologists and other doctors, we have made the decision to forgo the last series of chemotherapy that was scheduled for the last week of treatment. The chemotherapy is to help the radiation along, but is not the main course of treatment. In fact, many clinics throughout the country including Sloan Kettering have started to drop the last chemo treatment for several reasons, the main is the benefit versus the side effects and the problems with recovery time. Peg and I both realize if I do the last chemo session that most likely I will end up in the hospital for at least a week due to more weight loss. Our radiation oncologist agrees with our decision, and in fact let us know that about 65% of his head and neck cancer patients forgo the last chemo treatment and the cure rates are about the same! He also feels that the first two chemo sessions are the most important. So we are hoping the next two weeks will go quickly and we can get through whatever comes our way. Once treatment is done the radiation will continue to work on its own for about two weeks, and then the slow healing process can begin.
Well if all goes well treatments will end on April 24th which quite amazingly is also Arbor Day!! Peggy and I are going to plant an oak tree in our yard and hope to see it grow tall and strong with every passing cancer free year! Here is another favor I would ask all of you to try if you are able. On arbor day plant a tree, if you can, if you would like to dedicate it to my recovery that would be great but that is really not the point. Plant a tree for any one in your life that has been affected by cancer. I can’t think of a better tribute!!
Once again I have been so humbled and honored by all of your notes and thoughts. And a special thank you to all of you who have been taking part in the “Change is Coming” program set up by Cathy Marczyk. Peggy and I have been floored by all of your generosity. It will certainly go to good use. Thank you from the bottom of our hearts. Pray for a quick two weeks and I will look for all of you at 7:00 pm.
Sunday, April 5, 2009
Over the last few weeks I have been receiving emails stating “Change is coming” stay tuned. After one or two I thought nothing of it but they just kept coming. And this week checks began arriving from folks who had saved their change for the month of March and then in turn forwarded it to Peggy and I as April showers. I can’t believe the response to this, we have heard from people all over the country, and April has just begun! To those of you who have participated in this our heart felt thanks to each and every one of you. And I know that Cathy Marczyk spearheaded the whole idea so a great big hug and thank you to Cathy and Ron, what a wonderful idea and it could not have come at a better time.
This was a difficult week to put it mildly. Chemo on Monday with all of the cumulative effects of the radiation kicking in and you have a real tough situation. We have been experimenting with using the peg tube and one of the nurses put us on a medication to take half an hour before attempting a feeding. Every time we would use the peg tube fifteen minutes after eating I would have terrible diarrhea and lose everything I had just attempted to put into my stomach. Also the chemo has a caused a lot of vomiting and dry heaves this week which have been extremely uncomfortable. So weight loss was an issue as the week progressed. In fact most of the weekend was spent in bed between anti-nausea drugs. We did get extra fluids at the hospital every day this week and that helped a little bit. We also have have stopped using the medication before tube feeding and if we can plan it between the Lorazipam and the Compozine we have a decent chance of keeping it down!! Also this week the killer mucus started in my mouth. What makes it tough is it gets really thick and the salivary glands have stopped doing the job of thinning things out, so it is near impossible to clear from your mouth. I rinse with salt water about 25 times a day and that can help a bit. Good friend Dan Berggren came to drive me on Tuesday, Wednesday and Thursday and it was great to see him. I realize that these next three weeks will just get more and more difficult and I pray for all your positive thoughts as we move forward. Here is praying for a better week this week.
I once again thank all of you for your beautiful expressions of love and concern for Peggy and I. I have been so humbled by all of your support and I pray that I will have the strength to see through the next three weeks and then on to putting ourselves back together! Also thank you for your generosity, the “Change is Coming” campaign is a stroke of genius and all your support is so appreciated!! I’ll look for you all at 7.00.