Side Effects: Skin, Swallowing, Dry Mouth

More on the subject of swallowing and eating:

Trouble swallowing. Call me ungrateful, but this is what bothers me most now. You'd think that now that I can eat what ever I want, pain free, and enjoy the taste, I'd be happy.

As mentioned before, radiation doesn't hit just the cancerous cells, it also hits normal cells surrounding the cancer.  These normal cells also die and before they do, they notify your immune system and rest of your body about their demise causing your body to try to stop whatever's causing the damage.

Of course the human body hasn't evolved any kind of suitable response for radiation damage so it does the best it can with what's at hand which is cause an inflammatory reaction at the scene of battle. An inflammatory reaction among other things causes redness, pain and swelling.

All this is going on whereever the radiation is aimed, in my case, my face and neck.  The entry point of the radiation (the skin on my neck) first turned bright red, like a sunburn and was as sore as a sunburn.  Sunburns are in fact radiation burns caused by the ultraviolet radiation of the sun, just not as intense as the type of radiation coming off of a linear accelerator.  There's a cream called Sulfadene (silver sulfadiazene) that can be used to soothe the burn and it works well. 

As treatments continue and the radiation doesn't let up, the skin begins to break down in a process called moist desquamation.  Yes, it's as icky as it sounds.  Your skin becomes moist and "weepy" as it tries to slough off the enormous amount of dead skin cells caused by the radiation.  I took to taping a 4x4 bandage with ointment over the area to keep the stuff from oozing onto my shirt and sleeping with a large washcloth over my pillow to keep from soaking the sheets at night.  It isn't especially painful, but enough so that I took to swiveling my shoulders along with my neck whenever I needed to look left or right.

As happens for some patients, it got so bad that the doctor had to pause my treatments for a few days.  My original 30 day, six week course of treatment stretched out to about 8 weeks because of the breaks in treatment due to the skin breakdown.

I hear you wondering "so what's all this got to do with swallowing?"  Remember  that radiation has an entry point (my skin), a target point (my tumor and lymph nodes) and an exit point (my throat) and that it affects everything in between (blood vessels, bones, nerves etc). Everything going on outside on my skin was going on inside my neck.

Most noticeable was the "weeping" of my throat. It felt as if there was congestion from a cold slowly building up in my throat, slowly closing off my airway. I was constantly coughing and swallowing and clearing my throat during the day and getting up in the middle of the night to have good hearty coughing sessions to clear the goop out that accumulated while I slept. I was up about 4 to 5 times each night for my coughing routine and it was absolutely miserable -- has to be one of the worst parts of my RT.   

In addition to the overproduction of goop in my neck, the radiation was also affecting my swallowing muscles.  Thin liquids like milk, water and juices gave me the most problems.  I found that swallowing a single mouthful of liquid would provoke a coughing fit because a few drops would try to sneak down my airway, but that "chugging" would allow me to swallow more liquid with the same amount of coughing -  more efficient!

Thicker liquids like milkshakes, and nutritional supplements like Ensure were easier to manage.  In fact there's a product called "ThickIt" which is a powdery something that you mix into liquids to ease swallowing.  It's nearly tasteless and other than the unusual sensation of drinking thick water, isn't all that bad.  Unfortunately I didn't learn about this product until after RT.

I still have swallowing problems even now 6 months post RT and have heard that problems can exist up to 5 years after therapy.  My symptoms aren't nearly as bad as during RT, but any trouble swallowing can lead to aspirating food into your lungs which can cause pneumonia.  I visit a physical therapist who has prescribed swallowing exercises.  They're simple and easy,  just hard to remember to do.

Dry mouth.  I'm left with a permanent dry mouth (xerostomia) since portions of my salivary glands (parotid glands) were removed during surgery and the remaining portions were in the way of radiation on its way to the tumor bed. This is common with RT to the head and neck and in some cases saliva production returns to normal afterward. It's certainly not a major threat to life but is a constant minor annoyance. 

For me the major annoyance is speaking and singing.  I enjoyed singing (a few local choral groups and church) before getting MCC, but now that I have a dry mouth, speaking or singing even a short phrase causes cotton mouth.  There's a drug (pilocarpine) that can stimulate saliva production but one first has to have the saliva glands to stimulate. Pilocarpine is also used in the treatment of glaucoma, so make sure your eye doctor knows about this if you end up taking it. There are over the counter artificial salivas too, but I've haven't used any myself, so I can't speak about how they work or how effective they are. I cope by continually sipping on water in order to keep my mouth moist. It's best to drink unsweetened or something artificially sweetened in order to keep from feeding cavity causing bacteria. Haven't heard anything bad about decaff coffee, but it can stain your teeth as I'm unhappily finding out.  

Make sure your dentist knows about your dry mouth.  Saliva, besides providing teenage boys with material for spitting, also cleanses the mouth and teeth. People with xerostomia have a larger than average incidence of cavities, so it's important to keep up with the oral hygiene. Whatever my other problems, I've been blessed with healthy teeth and have had only one small cavity in my half century of existence.  Still, today, I brush two to three times each day, floss, use a heavy duty prescription toothpaste and use a special fluoride mouthwash to keep the cavities at bay. 

During RT when your mouth is too sore to take a lot of brushing abuse, you can rinse your mouth after eating a meal.  Even if you're not able to eat a full "meal" it's important to rinse the food particles.  I was surprised at how much a simple rinse was able to dislodge and wash down the sink.  Stay away from commercial mouthwashes that contain alcohol: they dry the mouth out afterward.  If you do forget and use one of these, you'll only forget once -- the pain from one of these jokers is enough to sear the reminder into your mind.

There are several recipes for homebrew mouth rinses.  I ended up mixing equal parts baking soda and salt, then mixing 1 teaspoon with a cup of water.  I also used this mixture before bed and after my nightly coughing sessions to help thin and wash out the stuff oozing from my throat.  After coughing my lungs out, it was couple of quick "shallow" gargles and a "deep" gargle, then back to bed for another hour's sleep.

And Now For Something Completely Different

Here I am whining and warning about what happens during my cancer treatment when along comes an email from David Haas:

Hello

I have a question about your blog. Please email me!

Thanks,

David

David it turns out is an advocate of cancer education and champions the treatment and eradication of mesothelioma, a type of lung cancer most often brought about by asbestos exposure (though like MCC, anyone can get it).

After a few brief email exchanges (one where he said I had "great content"!  Honest!) he offered to write something for this blog that suggested that you can actually do something about the trails of cancer treatment:

Thanks so much for your consideration and compassion! The article attached, which I recently completed, is about the benefits of fitness and eating healthy during and after a diagnosis of any kind of cancer. Each different cancer has its limitations, but if one can keep a healthy body, they can have a better chance to overcome this awful disease. I have linked to reputable sources and studies in this field and tailored the article to your blog. Please let me know if you are able to post the article so I can shout it out from my twitter and facebook following in order to give your site more traffic.
Thanks so much for the help and all you do for these people,

Well!  Useful advice and a chance to play with indentation and font colors have just fallen into my lap!  How can I refuse?

Take it away David!

The importance of exercise throughout treatment

Fitness is an important part of life for everyone, and as a cancer survivor it is even more critical that you implement some sort of fitness routine to your daily agenda. Everyone has his or her idea of what it means to exercise, and it doesn't have to be a boring jog on a treadmill. People everywhere are starting to energize their life by getting active.

Studies are showing that physical activity can be one of the best treatments to regain the energy you need to go on with your life. The National Cancer Institute has said that physical activity is extremely important for energy balance.

Whether you have just been diagnosed, have been going through treatments, or are currently in remission, physical activity is one of the best ways to improve your quality of life now and in the future. All cancers, including mesothelioma, can really sap your energy and make it difficult to perform every day tasks. Going for a brisk walk through the park, dancing with your spouse, or taking a light swim can all be enjoyable ways to get the exercise you need to strengthen your body and ease your mind.

No matter what you decide to do, the important thing is to get up and get moving. A little bit of increased heart rate goes a long way when you are in treatment and having a hard time with your appetite. Treatment for mesothelioma and other cancers can be extremely draining, and exercise in combination with a healthy, well-rounded diet and plenty of rest is the best way to start feeling like your old self again while you fight this new enemy.

Throughout it all, just remember that you are your best ally. Sometimes it can seem tough to get up and go for a workout, but remember that it is helping you to beat cancer and get on with the rest of your life. The extra energy gained will help you power through the rest of your day and get things done.

So remember to eat an apple a day, and take that apple with you on the go as you take control of the situation and decide how your life is going to be. You owe it to yourself and your family to stay strong and beat this.

As recent victim of Radiation Therapy and Chemo, I know whereof he speaks.

The important part to remember that any exercise is better than no exercise.  Don't feel bad if you can't do much, especially if you're in the middle of treatment.  At that point no one cares if you can't lift a schoolbus - they're just happy you're alive.

At one one point during my RT, my exercise consisted of shambling out to the kitchen for breakfast at the crack of noon, going back to bed, up again about 3:30 to get carted to the cancer center for more RT, then back to bed, finally finishing my day with a liquid supper and sleeping the rest of the night. 

Now that I'm 6 months post RT and 2 months post chemo I'm able to lift light weights and walk about a mile without having to pay for it with a weekend of sleep.  I also feel ten times better each week than the week before. It makes a difference.

You can reach David at dhaas <at> mesotheliomacanceralliance <dot> org.

Note for the internet non-savvy: David's email address has been munged to prevent spammers from picking up a valid email address.  Replace the <at> with an @ sign and the <dot> with a period to make it look like a normal email address:  name@website.org

Yes, you'll have create the email manually.