Just a few thoughts about dealing with head and neck radiation and surgery.
The confusion that goes along with having radiation and or surgery for head and neck cancer and dealing with the side effects may be as traumatic as dealing with cancer. For me, it was very unsettling; the thought of not being here to secure my family’s future was overwhelming. Lucky for me I had cancer 25 years ago and had some insight on how to get through it. I do not think you can ever be prepared for the onset of cancer, but a little experience helped.
This is an overview of the road I have traveled. I hope it sheds some light on your journey.
Facility and doctor of choice:
After you have decided to be treated and decided on the proper treatment for your cancer, you will need to decide on a doctor and facility. Picking a doctor may be the most important first step. I think this is a numbers game. To go to a local hospital where you are comfortable and like the local doctor may not be the best choice. Plotting your radiation treatment may be the most important part and the question that comes up is, how much experience does the hospital and doctors have. You are going to be exposing yourself to a lot of radiation and should the initial plan not be as accurate as possible, you may suffer more tissue damage than necessary and you will live with the damage forever, or you may miss the cancer. You may have a great doctor who cares about the patient, but his case load is so high there may only be 30 minutes allotted in his busy schedule to plan the radiation. This is a process that should be done carefully and may take 4 hours or more. I think it is fair to ask the doctor how long he will allocate for the plotting of your radiation. Also ask him how many patients he is currently treating for head and neck cancer. Be careful to find a doctor with a good track record and who is accessible. You could find yourself with a doctor with great credentials and have a great meeting, but he may be handing the planning for your treatment and the treatment to a new doctor who is just learning. Make sure you know what you are getting.
The facility is another concern, in some areas there are small hospitals that go by the name of large prestigious hospitals and are directly connected to the larger well known hospitals. They fly the banner of the big prestigious hospital proudly. My concern with these facilities is the quality of doctor you may encounter. A doctor at a large prestigious hospital has the chance to practice his craft and be noticed and share in the prestige and rewards that go with his hard work. This attracts some of the brightest and best, furthermore, these hospitals work hard to attract the best doctors. The smaller hospitals that share the name of the larger ones may have doctors not looking to advance their careers, consequently you will be betting your life on someone content to run in the pack and not lead. And of course your local hospital may also be a bad bet.
There are smaller hospitals where doctors from the larger hospitals frequent one or two days a week. This may be an option, but again be selective, ask questions.
Likewise, the staff is important. They will be prepping you every day for the radiation and their caring demeanor, dedication and professionalism along with the compassion you will need some days is important. Meet them and see if it fits for you.
For me, I chose the Lahey Clinic. I had my first cancer may years ago along with several other problems and the doctors are some of the best. The facility and staff have always been top rated. I highly recommend Dr. Dolan for surgery and Dr. Garren for radiation. Be very careful of magazine ratings. They are very, very politically driven and not accurate. My first cancer was a real lesson. The number 1 rated doctor in the world for my soon to be surgery was a doctor in NY (I will not reveal his name.) After much research and investigation about the doctor, I discovered he had a 47% failure rate for the surgery I needed. Failure, defined as had to have a second operation to correct infections and other problems and some did not work at all. I found Dr. Coller at the Lahey Clinic who really was off the radar at the time, who had a 94% success rate.
Going for the ride:
The emotions that rise to the surface while fighting cancer are some of the toughest I have faced in life, not to mention the terror and confusion. I learned from my first cancer 25 years ago to pick my treatment and doctor wisely and then go for the ride. By that I mean, you picked the road you must travel, so stop beating yourself up and do everything the expert you picked prescribes and try and relax. There is little you can do except disrupt things anyway, so go for the ride with as much dignity as you can. Sometimes I had to find dignity in knowing my current actions are not me, just part of the ride and I will be back soon. Always remember that soon you will be out of the treatment and then it is your turn to fight the side effects and recover to all you can be. So give up control and when the treatment is over, take control and start fighting to get all you can get back.
Through my life, I have had several health problems dating back some 50 years. It took many years to make the commitment to take control of my emotions, but finally I took the time to get in control. It was one of my best decisions. Having been sick a lot during my life, I found my emotional state being driven by my physical condition. Every time I was sick or in pain I responded by feeling miserable. On the occasions where my health was good I felt good mentally. Basically I was on an emotional rollercoaster, driven by my health and news of my impending treatments and possible outcome. One day I decided to get off the roller coaster. I started researching meditation. To tell you the truth coming from the world I was brought up in, meditation was for crazy people. After some research I put together a simple relaxing procedure. It took a long time to be able leave my health behind and find a relaxing place, but finally I was able. That led me to another discovery and maybe the most important one of all.
“I am not my body,” basically I got out. I am the subtotal of all I have learned and become, the sum of those who love me, those I love, protect and provide for, the sum of my accomplishments and lessons learned from my failures. The day I realized that my body has very little to do with who I am as a man, things got a lot better. My body has been a lot of trouble, but I learned it does best when my mind is rested and strong to make the right decisions for its needs. Separating myself from my physical body gave me freedom from my health problems. Today, it is still an effort to keep the distance from my body, but mediation really makes it possible. There are many forms of mediation, I use a very simple form like the one that follows, http://www.summum.us/meditation/simple.shtml0, don’t be discouraged that it is not effective in the beginning, I promise in the months to come anyone who practices it daily will benefit from it.
Your skin will be affected by the radiation treatments. It appears everyone is different, some patients suffer little skin sensitivity and others have a difficult time with skin tissue damage. For me, I found the best solution to my sensitive skin was simple, A & D ointment. Also there is a product called Bag Balm which I have used and others have had good results with it. I think any ointment, not lotion will be helpful. The problem with lotions is they may contain perfume, alcohol and skin tightening chemicals and this may be counterproductive. So avoid products with alcohol and perfume, keep it as basic as possible and you will find one that works for you. There are products that are made just for radiation damage, but I found little difference in the performance. I think the goal may be to keep your shin hydrated and wait until your skin starts to rebuild. Do the same with soap; find a plain soap without perfume and other chemicals (your nurse will help you)
It is important to drink constantly during and after radiation treatment. Basically as I was told by my radiation team, if I do not have a bottle of water in my hand and sipping continuously, I am making a mistake. I think it is also important to replenish your electrolytes as you go. I have found great results for the past 20+ years with a simple to carry and use product called Emergen-C. You can find it at any health food store; Wal-Mart, etc. go to the following address to see the product. http://www.emergenc.com/index.php/products/original.
I buy them by the box, there are 36 small flat packages in a box, tear off the top of the package and pour it into a glass or bottle of water and sip. There are several flavors to choose from. Ask your doctor for his approval.
Getting calories and nutrition:
Calories, if swallowing becomes difficult during and after the radiation treatments or surgery, I found the best and most pleasant tasting drink is Nestles Breakfast Drink. For information on the drink go to http://www.nestlenutritionstore.com/general-itemdetail.asp?T1=CIBVHC+VANI+24CS&Cat=CIBVHC. I think it tastes much better than other high calorie drinks and the calories are higher so you have to drink less. This drink has 560 calories for every 8 ounces; they also have the same drink with less calories, this drink made my life easier. I would drink it during the day and inevitably during the night I would wake and I would have one in the middle of the night. The viscosity of this high volume calorie drink is thicker than others and this does 2 things. 1. It will be easier for your damaged throat to control it and swallow and 2. It will give your throat gentle exercise. Keep swallowing or you will not be able to later.
By all means ask your doctor to write a prescription for Nestles Breakfast Drink and they can arrange for it to be delivered to your home.
I think food and calorie substitutes are essential if you are not swallowing well and cannot eat solid food however, you can never hope to get proper nutrition from a can. We have all seen the boring commercials on TV for juicers. I have one (actually I have 3) I bought my first one 40+ years ago and still have it. The one I bought 40 years ago is an Acme (no it did not come from a road runner cartoon) and it is my favorite. You can find it at http://www.amazon.com/Acme-6001-Juicer-Juicerator-Centrifugal/dp/B000E4AO6M/ref=sr_1_2?ie=UTF8&qid=1301064221&sr=8-2. It has an extractor that will take all the juice, vitamin, minerals and enzymes out of the vegetables and leave you with virtually saw dust dry pulp to discard. Most other juicers leave very wet pulp and you are losing a lot of the nutrition. Also I have found the Jack LaLanne juicer to work and be very cost effective, but a little hard to clean and the discarded pulp is wetter than the Acme. You can find it at http://www.amazon.com/Jack-LaLanne-JLPJB-Juicing-Machine/dp/B00067R5X2.
The juicers that are sold as blenders, (you have seen Montel Williams pushing one and there is also the Silver Bullet), blenders do not extract the pulp, they grind it up and include it in the drink, these are a problem. First you have to drink all the pulp and it has no food value and the bulk of the pulp will fill you up. This will limit the calorie drink you can consume and of course the pulp will be rough on your throat. If you are constipated and need fiber, find a soft fiber like mucilin fiber and many others that build a very soft mass for your bowel to push upon.
There are plenty of recipes for juicing on the web and in books dedicated to juicing. I think you should make an effort to stay away from fruit juices. They have too much sugar and cancer seems to like sugar and the acid may hurt your throat. Vegetables have much more nutritional value. I always use carrots for my base. Finding a carrot that you like is important. Some carrots from the south east of the USA are very poor tasting. I prefer carrots from California and of course organic carrots. Some health food stores have juicing carrots and they taste great and have a lot of juice. To the ½ glass of carrot juice I add broccoli, cabbage, red beets, celery, cucumbers and any number of green vegetables. Once you get the hang of it, you can mix very tasty drinks and twice a day would be very helpful for your recovery.
Supplements: Supplements are a welcome addition to add to your intake, but the quality of the supplement is very important. I highly recommend cod liver oil. There are many kinds of cod liver oil and most of them use high heat and chemical extracting methods and there is little or no value left in the oil. It makes little sense to kill all the vitamins and nutrients in the oil during processing and then add synthetic vitamins and nutrients. Currently the one I use is Carlsons, it can be found at http://www.carlsonlabs.com/p-107-cod-liver-oil-lemon-flavor.aspx. it is lemon flavored and easy to take a spoonful at a time.
Other supplements may be beneficial also. I would look to companies like Standard process located at http://www.standardprocess.com/display/router.aspx. Their products are a little pricey, but may be worth it.
Before you start shopping for other nutritional additives keep in mind that between your Nestles supplement drink, Emergen-C drink and cod liver oil you are getting quite a bit of nutrition and your juicing will bring in the natural enzymes and vitamins.
Oxygen: This is imperative; oxygen treatment in a hyperbaric chamber is a must in the treatment of tissue damage due to radiation treatment. I have used two types of chambers, the multi person chamber and the single chamber:
In the multi person chamber you will be sitting with 4 to 10 people in a closed pressurized chamber. I think there is a benefit to this chamber as it did help me, but there has to be a concern with regard to your immune system being suppressed and the possible germs or viruses in a multiple person closed chamber. In a multi person chamber you keep your street clothes on and the atmosphere is the same gas mixture inside the chamber as it would be outside. They increase the atmospheric pressure and you wear a mask to deliver oxygen to your body.
In a single person chamber, you remove all your clothes and jewelry; they lay you on a gurney and slide you in a clear Plexiglas tube. They close the door and you can watch TV or relax for the treatment. In the single chamber you are surrounded with pure oxygen and it is again under pressure. Personally I think I benefitted more from the single chamber. If you are claustrophobic as I am, not to worry, the chamber is entirely clear and you may find the rest welcome. It is kind of nice to have some quiet time away from the real world. Also this is a good time to practice your meditation. See more about oxygen below under exercise.
Exercise: This is a must, it is essential to get as much oxygen to the damaged tissue as possible and there is no way to better accomplish this than with exercise. In addition it will give you the positive attitude you need to get through this ordeal. The minimum exercise you should do is 20 minutes of aerobic exercise three times a week. I recommend that you buy a stationary fan bike with movable arms. This will get your upper and lower body moving and with minimal impact on your joints. I recommend some weight training to build muscle, but that is optional. I have found through the years that if I enter the hospital for any reason, my stay and recovery are easier if I start my ordeal in shape.
Exercising is not optional. You have to commit to a stationary fan bike. Many places sell them and they are not costly. Actually you can find them on craigslist. This address will show you the type of bike I am recommending http://www.walmart.com/ip/Marcy-Classic-Upright-Fan-Bike/1958217?findingMethod=rr.
Exercising with oxygen:
There seems to be enough information out there indicating a significant advantage to doing your 20 minutes of aerobic exercise on your fan bike while inhaling oxygen. There are many companies selling oxygen generating machines. Here is a company <http://www.breathing.com/o2e2.htm> that sells rebuilt oxygen generating machines for less than $500.00. I understand that all you have to do is call them and say you got their number from Healthalert.com
One of my biggest daily situations was thrush and mouth infections. I tried everything I could and found that thrush medicine would help, but I suffered digestive disorders from taking it. More antibiotics for the mouth infection led to more thrush. It seems because of all the tissue damage, lack of circulation of blood in the mouth tissue and a lack of saliva, our mouth is in for a ride of its own. I am sure you have heard that you are going to start to have tooth loss in addition. I will lay out a routine I have found that helps me greatly with my mouth problems. PLEASE, before getting involved consult your doctor.
Brushing: I brush after every meal with an electric tooth brush, get a good one for home and battery ones for the times when you are not home. The good ones have a timer and let you know when 30 seconds is up. So you brush the front of the top for 30 seconds and then the back for 30 seconds and continue with the bottom. Then you must massage the gums with the same tooth brush. This will help with circulation (also see hand massager.)
Floss: Floss all teeth, for me I find the little hand held ones are more convenient and you can run the point along the gum line gently for extra cleaning.
Waterpik: After brushing run a waterpik over the entire gum line and you will do 2 things, You will force any food matter out of the gum and you will force oxygen into the gum line further killing bacteria. I recommend the waterpik that sits on the counter with a water reservoir on the base unit and a hose to the business end of the waterpik. The hand held battery ones seem like junk. I returned 3 of them before switching.
Hydrogen peroxide: Buy a bottle of hydrogen peroxide and mix it with 50% water. Take about a tablespoonful and hold it in your mouth for a while. At night, I clean my teeth and then take a swig and jump in the shower. I hold it for about 5 or 10 minutes and rinse. During the day, I rinse with the mixture first thing in the morning after breakfast and cleaning my teeth and if I am having mouth trouble I also rinse several times a day. If you find your mouth is sensitive to the mixture of 50% cut it down to 25% hydrogen peroxide 75% water until healing takes place and then increase it to 50/50. Mix small amounts for use in a clean sterile jar, mix up a week’s worth at a time in case anything in the water starts to diminish the effectiveness of the solution. Always do this after the brushing routine, it is at that point that your gums are exposed and you will kill the most bacteria. An additional benefit is that you will notice your teeth will get whiter.
Grape seed extract or oil: For me, this was a large piece of the puzzle to control thrush and mouth infections. There are many companies that make it and it is easily found at your health food store. Put 20 drops in your Emergen-C drink and it will taste great. Don’t try and drink it in water alone as it is very bitter. Here is a company that I have been using, NutriBiotic GSE, http://www.nutribiotic.com.
Massaging your neck, face and gums: Many years ago when I was a kid (I am an old guy now) I would go to the barber and get a haircut (currently I am follicley challenged, as my daughter calls it so I do not go often). After the hair cut the barber would put this big motor on the back of his hand and it would make his entire hand vibrate. Then they would proceed to rub your head, neck and shoulders. The intent was to stimulate circulation. Well it was my favorite part of the haircut, you guessed it, I use it to massage my face, neck and gums. Well the gum part is limited to touching your gums with your finger tips. I know there is evidence that brushing the gums with the electric tooth brush stimulates circulation to the gums so why not take it to the next step. There are several models of Oster massagers out there. If you can find a two speed massager by Oster get it. The 103 Oster Massager can be found all over the net. It is a single speed one. The 2 speed one looks identical except it has a 2 speed switch and I think on high it is faster. I prefer the 2 speed, but all the Oster massagers that look like the 103 will work. The others have little power and are not worth the money. Ebay has a ton of them every day and you can get them inexpensively.
Time for recovery: The recovery period for radiation is very diverse. It seems some people recover more quickly than others. I am about 3 years out from radiation and still getting better monthly. There are ups and downs, but overall I am getting stronger. One thing that seems consistent is that your general health can be greatly improved by a commitment to a plan. I think every little thing we do will add to our good health and become a piece of the puzzle. I have learned there is no such thing as the one great answer. People who search for that one answer to their quest or that doctor who will fix them forever, find themselves always chasing the next great answer. It is about small pieces, putting together everything that will take us closer to our goal and working hard at reaching our goal. The Beatles were great, but they were great together, they were greater than the sum of their individual capabilities. That is how putting little pieces together work. It is not about the little thing you do, it is about how they interact to be much more. The sum of your efforts to get better will be greater than the small things you do, so never stop doing everything you can.
It is clear to me from my past experiences with disease that the best doctor in the world can only cure the body. How we live with the onset of the disease, the transition through the cure and live with the cure is up to us, not the doctor.
Never forget this did not happen to you, it happened to your body, separate yourself and get busy living your life.
During your surgery and radiation it is important that you tell your doctor everything you are consuming. It is possible that some nutrition may interfere with the treatment or drugs you are taking for the cure. After you have had the surgery and / or radiation you are pretty much able to consume any supplement you like.