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.

Side Effects

It occurred to me today that I never really suffered from cancer, I mostly suffered from treatment of the cancer. Of course this would have changed over time I if I hadn't chosen to suffer treatment, I wouldn't around very long to complain about the side effects of "simple" cancer.

This is only one way a diagnosis of cancer changes your life. Right now my major complaint is the damage done to my throat from the Radiation Therapy.

Not many people (including me) ever think about the side effects of radiation because it's pretty low key. Side effects of chemo are usually pretty dramatic: vomiting and hair loss are pretty noticeable to other people. The administration of chemo is also pretty dramatic. Most people have surgery to implant a port a few weeks before the chemo starts, you're hooked up to a bags of chemicals that are essentially drain cleaner mixed with poison, the actual infusion can last hours, machines are beeping, and nurses are checking on you constantly during the infusion.

(Mostly it seems to make sure you remember your name and birth date, but I'm sure there are medical reasons too. One time, when changing my IV bag from drain cleaner to insecticide, the nurse asked me for my name and birthday and I answered without thinking "Same as last time!" She must have been new because she thought that was funny.)

Radiation is major stuff too, but it's sneakier. It's colorless, odorless, invisible, silent, and you can't taste it. The actual irradiation part takes only about 15 minutes and other than a few clicks and hums, there's nothing to indicate that anything is happening at all. There's no pain or any outward effect afterward to indicate that you been blasted by an atom smasher either. It takes awhile for radiation to do its damage (it's "work") and it takes a while for its work to fade away.

I can only speak for my particular case (head and neck radiation) and I was also doing chemo concurrently in order to make the RT more effective (more damaging). I'm sure there are other side effects I haven't dreamed about, but for those of you still reading, here's what I experienced and continue to experience nearly four months after RT.

Mouth Sores. Or Mucositis for those of us who like impressing people with medical words. Chemo can also cause mouth sores but in my case I was also receiving radiation to my face and neck. And what's on the inside of your face and neck? Your mouth and throat! The dosage, placement and timing of RT is very carefully calculated to cause the maximum amount of damage to the tumor site and the minimum amount of damage to the surrounding area, but collateral damage occurs nonetheless.

The mouth soreness was mild except when trying to eat. Mostly in the back of my mouth (right where the tongue dives into your throat), it was a burning that nearly always started on the right side. From there it would spread to the left side of my mouth and burn. Fortunately the pain was alleviated by water so a swallow of water would calm things down allowing me to continue eating. Everyone seems to be able to find a few foods that are more tolerable than others and I found mine: cream of wheat, processed chicken nuggets and jello. None of it tasted good mind you, but it at least it didn't hurt as much.

There's something called "Magic Mouthwash" that can be prescribed and mixed by any pharmacy. It's a concoction of viscous lidocaine (a topical anesthetic), diphenhydramine (an anti-inflammatory) and Maalox to help coat the tissues in the mouth.  Sometime it also contains Nystatin, an anti fungal to control yeast and fungal bloom in your mouth, a result of the immunosuppression brought on by chemo.

It tastes awful and after my first swig, I wasn't even sure I was supposed to actually swallow the stuff. I swore that I'd never use it, but wouldn't you know it, it ended up relieving a lot of pain. It's effects were fairly short lived, especially when I ate and drank right after taking it, but taken before bedtime, it lasted long enough for me to fall asleep before my throat woke me up.

Now there're no more mouth sores and I can eat a fairly normal diet except for acidic and spicy foods. Tabasco sauce and the like are naturally out of the question now, but even things like salad dressing, mustard (the cheap yellow kind) and ketchup (seriously!) are off limits. I don't know how long this will last, but I look forward to the day when I can eat without fear of pain.

Loss of taste. At first food tasted funny. Then it didn't taste like anything. Then everything tasted bad. I never realized how important the sense of taste was to survival, but it's there for a reason. In my case the first thing that went was sweetness. Eating chocolate ice cream was akin to eating cold cocoa. Candy bars were just sticks of chewy stuff that was hard to swallow. It took about a month after RT was finished for my taste buds to start recovering and I tried helping things along with zinc supplements. I read on the internet that zinc was crucial for the sense of taste and there was a lot of chatter about how mega doses of zinc would restore a sense of taste. I bought a bottle of generic zinc pills and doubled the recommended dose. Still not sure it helped anything, but my doctor said that my dosage couldn't hurt anything so why not?

The bright side of this is that my taste buds seem to have made a full recovery. My wife enjoyed the look of delight that accompanied the statement, "Hey!  I can taste (a formerly untasteable  food) now!"

Stiff jaw. The RT was concentrated on the right side of my face since that's where the original tumor site was, and the tumor sat pretty much of top of my right temporomandibular joint (that's where the jaw hinges to your skull).  Dr. Guierrer warned me about stiffening of the jaw and prescribed exercises to keep the joint from freezing up. I was pretty faithful about doing them (4-5 times each day) until the pain in the back of my mouth kept me from opening my mouth more than a little bit, say about the width of two soda straws.

Before RT started, I made a stack of tongue depressors that just fit between my front teeth to gauge my jaw's range of motion.  After RT was finished, I found that I lost about half my range, but it was mostly due to the mouth and throat pain -- not muscle and tendon stiffness. I regained most of my range once the pain abated, but still needed to do my exercises regain my previous range of motion. I still feel a little stiffness and pain when I open wide, but it's nothing major. It just serves as a reminder about what I went through.

Pain when swallowing. And I mean pain like swallowing razor blades (or what I imagine what swallowing razor blades would be like). Having a kidney transplant, I take a fair number of pills each day. Usually I pile them all up in my hand and throw them down my throat, then wash them down with a drink. Not during RT. What normally was a five second operation now took minutes as I swallowed each pill, one at a time. It wasn't just pills, it was any sort of solid or semi-solid food that hurt. There wasn't much to do about it except take small bites and work through it. Liquids didn't pose much of a problem, though they presented challenges of their own.

Enough griping for now!  I'll go on about how miserable I was in a later post.

Stick a Fork in Me, I'm Done!

My last chemo infusion finished up about 3 hours ago. I'm a free man!

At least I'm free of the infusions. I won't be completely free of treatment until Sunday when I take my last dose of Drain Cleaner capsules they make me swallow.

When you're done with chemo, the Chemo department likes you to ring a bell in celebration, which also reminds the other patients in the room that chemo doesn't go on forever -- you can emerge on the other side of this ordeal.

 

Just after I got unplugged for the last time.

Ringing the bell.

And why not?  She suffered through this too!

Of course, there are always statistics to contend with as so poignantly illustrated by this cartoon.

That's why they call it a remission instead of a cure.  In my case, statistically there's a 50% to 80% chance MCC will come back in the same spot. Things working against me are sun exposure, co-morbid squamous cell skin cancer, and immunosuppression. Things going in my favor are my age (relatively young), the stage at which it was caught (no distant metastasis), aggressive treatment (surgery and RT and chemo), and diligence (I take a good close look at my skin nearly each morning).

I'll be followed very closely for the next couple of years with PET and MRI scans to make sure nothing grows back and will be dealing with side effects for the next few years, but other than that I can live a carefree, cancer-free life.

Swamp Draining

It's been mid-April since the blog has been updated and that was by my wife no less. I intended this to be a more or less daily chronicle of my cancer treatment, but as we say here in the South, when you're up to your [butt] in alligators, it's tough to remember that you're supposed to be draining the swamp.

Mid-April was towards the end of concurrent Chemo and Radiation Therapy and the energy and gumption were zapped right out of me. I was doing little more than sleeping.

The end of April, after my last RT, was when I hit bottom; Three and a half months later, that's changed. I feel almost normal now, though still tire easily.

You're probably wondering (you haven't?!) what I've been up to for the last few months so here's a short rundown of what's happened:

• Lost, then regained nearly all my voice.
• Lost my hair.
• Lost the ability to spit (It's important in some social circles!)
• Nearly lost the ability to swallow food.
• Lost 25 pounds (no, don't even think of trying this instead of Weight Watchers).
• Had a horrific skin breakdown where all the electrons kept bombarding me.
• Learned to appreciate the role of taste in keeping your appetite.

I still intend for this blog to be a guide for the novice cancer victim so he or she will have some idea of what to expect. Future posts will include these topics and more.

Unrelated side note: When I took typing (now called keyboarding) in high school, I was taught to always use a double space between sentences.  Now I've recently learned that good style requires that only a single space separate sentences (I love alliteration!). It's a hard habit to break, but this and future posts will adhere to this new rule.  What do you think? What do you care?

Emotions of a caretaker

I had no idea Paul's cancer would be so hard for me emotionally. I don't really understand it but it is very real. I don't DO much for Paul; he mostly sleeps and then wants to do for himself when awake. We haven't talked in about a month because he can't speak (neck radiation); we do communicate but it not the same. I find myself easily frustrated, to the point of tears. Right now I have tears flowing down my cheeks and they won't stop. I know it is "normal under the circumstances" but it's not normal for me. My mom has been down for the last week and she has been wonderful. She has prepared meals and weeded my overgrown flower garden. I wish she could stay another 2 weeks! People ask if there is anything they can do, but then don't help when I say I could use help with housework and getting my desk under control. This evening I just put everything on the desk on the floor so I could sit down and write out 2 overdue birthday cards to people I love dearly. Our 16 year old made dinner (every Sat. night) and every time he does it stresses me out due to his arrogance in the kitchen. He thinks he is his father and knows all about cooking. He doesn't, yet refuses to use a cookbook or take direction from me. "I know what I am doing." Paul will help him in the kitchen but he can't do that right now and I don't have the patience. Paul said he wanted to sleep through dinner and we let him be. I started this crying jag after I went to the dinner table and found the place settings 6"-8" from the edge of the table. Stupid right? But he has been taught correctly and was just being lazy about it. After 'words' I had them start without me so they would enjoy their meal. I went out to the porch and just cried. I remembered the power of writing and reaching out, that is why you are reading this. The tears have stopped and I feel a little better. I am thankful for this group and your support. A lot of you understand what we are going through.
Thanks for listening,
Leslye

Long Overdue Update

Paul is doing as well as can be expected, I guess. I don't think either of us are doing very well; Paul with his treatment and me with feeling helpless and worried about his health. Paul's last chemotherapy is TODAY! Unfortunately, he has 8 more doses of radiation and that is what is doing him in. Thursday the doctor canceled that day's radiation treatment and gave him a 4 day +weekend hiatus from radiation. He was overjoyed. He will restart on Weds. She stopped it due to his skin breaking down too much. Paul is unbelievably tired. I now lovingly call him a cat. He lost his voice the first week of treatment and now his throat and mouth are sore beyond belief; it is extremely painful to swallow, thus eat or drink. Thank you for all your thoughts and prayers. I never knew what a nightmare this would be. I don't think anyone can understand unless they have walked the path. Blessings, Leslye ps-cards from family and friends would raise our spirits.

He's Back.

In addition to life and work getting in the way of posting, I had the complication of a blood infection with high fever that put me in the hospital for five days.  I'm back at home now, cooler and weaker.

In spite of feeling miserable for the couple of days, it was a pretty pleasant stay.  The nursing staff at LRMC is phenomenal - professional, friendly, polite, knowledgeable and patient.  All the attention made me feel like I was staying a special hospital themed resort.

Here are some things I learned:

• In addition to the phone, your IV pump has a higher chance of going off when you're in the shower.

• Don't stop breathing when a doctor or nurse places a stethoscope on your back.  In spite of what we learned with our toy stethoscopes in kindergarten, they can be used to listen to anything inside your body, not just your heart.  Learned this when a nurse mentioned how much it irritated her when people stopped breathing when she put a stethoscope on their back

• Hospital gowns can be comfortable and if tied properly, discreet.

Update on Paul through a wife's eyes

I have never felt so helpless.
The beginning of last week (Paul's 2nd week of chemo & radiation) he started to lose his voice and soon after his throat became horribly sore due to the daily bilateral neck radiation. His throat pain makes it very difficult to eat which breaks my heart.
Paul enjoys the flavors and textures of foods; he loves to taste and identify all the different flavors in his meals. It is like a challenge to him. His increasingly sore throat and tender mouth make it excruciatingly painful to eat. He is forced to eat very slowly and have foods at neutral temperatures. No more piping hot or spicy foods, his preferences. These joys have been taken from him.
After sitting down with 3 cookbooks for cancer patients at Books A Million, I choose and recommend "Eating Well Through Cancer" by Holly Clegg & Gerald Miletello,MD. I quickly found out Paul doesn't care for the thickness/texture of smoothies. (I'll look for other recipes on the net)
I feel helpless because I feel like I can't cook meals/snacks he can easily eat and get energy from; I can't make his throat and mouth feel better (of course he is doing everything the drs. tell him to), I can't give him energy so he can stay awake and live his life.

Okay! Off pity pot!
I love Paul more than ever and we are in this fight together. I love the Lord and know that He is in this fight as well, healing Paul. I am doing everything I can to take care of my husband and I spend all the time I can with him, even when he is napping. I now have a list of support groups and will join one next time they meet in April. I need to listen to and believe Paul when he tells me I am doing a great job.
I just wish I could cure him...but I am not God.
Thank you for all you thoughts and prayers,
Leslye

3 down, 3 to go

...though you wouldn't know it from the posting action going on.

Had my third chemo, 11th RT treatment today.

Been busy trying to figure out how to work my updates into work, sleep, life, sleep, play, sleep and extra sleep because of the chemo.  I AM keeping daily track of what's going on in the daily log, just not publishing it.  Will hopefully have enough energy to post something more substantial tomorrow night, but yeah, I'm still here, just not real verbose.

One Down, Five To Go

This here being a Saturday marks my first week of Radiation Therapy, and so far, I'm winning.  Chemothearapy got the better of me on Thursday, but at least I've got a better idea about how this whole chemo nausea stuff works.

One thing I've learned is that I'm not different --chemo will make me sick just like everyone else.  If you're reading this before you start a course of chemotherapy, know this - unless you're blessed with an alien's digestive system, you will get sick.

It's the sneakiness of the process that got me so cocky.  After my first infusion, I felt terrific, ready to take on Charlie Sheen, tiger blood and all.  Part of it was probably just the relief of finally getting this part of the treatment started, but part of it was because of the other drugs administered with the chemo, one of which is an anti nausea medicine.  I recieved nothing in the way of anti nausea after that, so I was basically an overconfident kid waiting to be taken down.

In a way, it's a good thing I got sick.  It means the chemo is doing what it's supposed to, killing quickly dividing cells like cancer and the lining of your digestive tract.  It's one of those No Pain, No Gain moments.

Looking over to the right, you'll notice a link to a new page, one that actually means something.  I'm going to try to keep a (I hope terse) daily log of what's happening, so that others who haven't had the benefit of this type of chemically enhanced living will be forwarned.

Better Living Through Chemistry and Radiation

Today is the big day, start of treatment!  I am now officially under the influence of radiation and drugs -- so my writing may reflect that fact.  After carefully checking my person for ants, spiders, gila monsters, leeches, moths, snakes, crabs, praying manitses, octopi, blobs, and anything I may have picked up from outer space, I headed off to my first treatment. 

What?  You think I’m going to chance irradiating something that could turn giant and terrorize Central Florida?

The chemotherapy came first.  Chemo's job in my case is to make the MCC cells more radiosensitive, so it had to be in my system before any radiation could take place.  I find it ironic that at 18, I was hooked up to a dialysis machine to take poison out of me, and here I am 30 years later, going to be hooked up to a machine that will put poison into me.

The first order of business was connecting me up to the IV equipment through my week-old port.  It was still fairly sensitive but not nearly as sensitive as last week.  When the nurse put the needle in, it felt like any other needle stick I've had with the exception of feeling a definite "pop" as the needle pierced septum of the port.  I'm not trying to make anyone squeamish, just trying to let you know that in the long run, a port is a Good Thing and it doesn't hurt any more or less than a regular needle stick.

Each time I get chemo, I have to have labs beforehand so the doctors and nurses will have an idea of how my body is responding.  They're mainly interested in how my white blood cell (WBC) count is doing so that if it gets too low they can counteract it.  They're also keeping a close watch on my kidney function since I have a kidney transplant.  This is worth mentioning only because this time, the blood was drawn through the port - the dirty work had already been by the needle in the port, so no new sticks!

The next step was pre-medicating me with a couple of drugs, one to prevent nausea, and another similar to a steroid that would help prevent adverse reactions like swelling or rashes.  This took about 15 minutes to infuse and I didn't notice any side effects or unusual sensations other than feeling the cooler medication flowing into my warmer veins.  It's not painful, but can feel kind of creepy if you've never had an infusion before.  The nurse mentioned that the anti-nausea drug sometimes "makes people antsy, like they need to clean out the garage in the middle of the night."  Sounds more like "gumption" to me; if it makes me feel like getting onerous chores out of the way, I'll count it as a positive side effect.

After the pre-med, I was started on the main course -- carboplatin.  This is the drug that will make the radiation more effective and to a lesser extent, interrupt cell division of the MCC.  Once I was started and stabilized on the drip, I was booted out of the chemo department and sent over to radiology for my IMRT, pushing my IV stand ahead of me. One thing that struck me on the way over is how everyone moves out of your way when you're pushing IV bags and pumps around.

The IMRT was essentially the same as my Radiation Simulation, except shorter.  I took off my shirt and the mask that was previously made during Radiation Simulation was placed over my head and shoulders and bolted to the table.  The mask did it's job admirably by making my head and face completely immobile, even pressing down on my chest a little bit making me aware of my chest rising and falling as I breathed.  I'm not claustrophobic, but lying immobilized on a cold table in a chilly room, unable to speak, and aware of every breath can be stress inducing.

During the process of the radiation techs double checking the measurements made earlier, Tiffany, one of the radiation techs, kept up a running commentary about what was happening around me which was very comforting.  The radiation field placements are very finely tuned, down to the millimeter and took about 15 minutes.  There are machines now so precise that for chest and lung treatments, the radiation is timed to your breathing so that your lungs and chest are irradiated only at certain points of your respiration when they are at the same spot as your previous breath.  It's that precise.

The mask is so snug on my face that I can't even open my eyes fully and even then, what I see is the ceiling through plastic mesh.  It hightened other senses making me notice things I probably wouldn't have, such as how the pitch of the whirring motors sound like a major third, how the sound moved around me while the machine moved, the smell of the magic marker they used on the mask in order to calibrate the machine to my position, and a quick, sharp scent of ozone (I think) as the machine cranked up to produce radiation.

By the way, there are no radioactive materials in the machine.  The radiation is produced by a liniar accelerator (or "linac" as the pros know it) which is under complete control of the technician.  That's all I can tell you about it as we had only discovered four elements (chocolate, duct tape, WD-40, french fries) when I was in high school.

After the techs left the room for a second time the actual radiation treatment commenced.  It wasn't much different from the calibration a few minutes ago except that there were a few extra hums and the knowledge that this time, real live radiation was being aimed at my head.

Even though it's been explained to me a dozen times that radiation is colorless, oderless, tastless, invisible, and can't be felt, I knew I could feel pinpricks on my skin and a funny feeling inside my brain, the same way you know that your line in the grocery store is moving slower than the rest or that your computer hates you and erased your file right before you had a chance to save it.  At one point, I swear I saw a flash of blue light even though my eyes were closed.  Going to mention this tomorrow to see if my optic nerves are getting cooked.

After about 15 minutes of forced introspection, the techs came into the room to release me.  There was something special for the staff going on right after my treatment, so there was very little time to answer my questions and I was punted back (in a nice way!) to the chemo department again.  The carboplatin infusion had finished during RT so all that remained was to disconnect the IV and flush the port.  I was given an appointment for next week's infusion and presciptions for labs to be drawn for next time, and I was on my way.

Right after I got out the door I took stock of myself:  I hadn't thrown up, I was able to walk, I wasn't fatigued, and felt as "normal" as I had ever had.  I also had a disquieting feeling that there were cells in me that were rapidly dying at a much faster pace than normal and my insides were getting cluttered with dead cell detritus.  I didn't really feel any effects until about 20 minutes later driving home, a slightly nauseated feeling, but certainly not a dire feeling that I was about to blow grits.

As of now about seven hours after my first treatment, the only thing I've noticed is a slighty "wired" feeling that's unusual for me to have at this hour and a slight headache.  It feels like I've had too much coffee.  Funny thing though, the chemo nurse said it's the anti nausea medicene that can cause the jitters and give you insomnia; I may not be feeling anything from the chemo.  It could be from caffine withdrawal (only one cup today) or the fact that spring time (yes, spring starts in MARCH in Florida) causes all sorts of stuff to bloom that bothers my sinuses.

There's still tomorrow though.  It will be an interesting day.

(It's late, I'll fix the grammar and typos tomorrow.  Bear with me.)

Update 3/8/11:

Fix typos, introduce new ones, wordsmithing, more detail about RT.

A Morning At The Bionics Garage

Greeting humans.  I'm now officially a cyborg, all plumbed with a Super Port and ready to go for chemo.  The port was put in yesterday morning with no complications.  All hail our robotic overlords!

The only reminder of the procedure is a very sore spot on my upper right chest and some lingering sleepiness from the happy juice, and an official identity card and owner's manual.  The card is something I'm supposed to show other doctors and medical personal to let them know that I have an implant and what it's used for.  The owners manual explains the basics of having a port and who how take care of it (summary: don't mess with it yourself,  and don't let anyone but doctors mess with it). 

I started off as usual in the little room where you change into the fashionable hospital gown and the IV catheter is inserted into your arm.  Things must have been moving fast because barely 10 minutes later, I was wheeled down to the "Interventional Radiology" waiting area.  This is the waiting area before the procedure.  It must have been a slow part of the day because Leslye and I had the attention of three nurses to answer our questions.  We even had a nurse scare up a drug company's promotional poster explaining how a port works and what's involved in implanting one.  My port was going to be a "Super Port" capable of handling high pressure injections.  I wasn't too sure about the need for having high pressure piping installed, but the nurse said that in come cases, a CT scan will require a large amount of dye in a short period of time which requires that the stuff be shot into your veins under pressure.  Standard ports aren't rated for this type of use.

We both waited awhile before Leslye had to run off to her chiropractor appointment, She was extremely ambivalent about doing so; she was concerned that I might feel uncared for if she left.  I figured I had a whole hospital full of staff to keep me in one piece, so I could spare Leslye for an hour or so while she got some relief for her back pain. 

After Leslye left, I dozed in and out until it was my turn.  I was rolled into the procedure room and was allowed to keep my glasses on.  Usually if I'm not already knocked out, the room is a blur.  I was struck by how "cluttered" the place looked.  In it,  there was an entire wall filled with glass-fronted cabinets containing supplies.  A huge imaging machine (x-ray machine?), was in the middle of the room and there was even a calendar hanging on the wall.  One of the nurses explained that this wasn't exactly an operating room.  The actual procedure isn't all that complicated and didn't exactly merit a full operating room, but because of the huge risk of infection (germs can use the port as a direct route to my bloodstream), the procedure takes place in a sterile environment.

I shifted from the gurney to the table underneath the imaging device and everyone got extremely busy.  I couldn't tell what exactly was going on and at one point, when the nurse put some kind of sedative into my IV, I stopped caring.  It wasn't enough to make me doze off, but it was very wooze inducing.  I stayed that way and even chatted with the nurses about kids these days! and about our fine governor's plans to gut our state's schools and services.  There were a couple of times when the doctor performing the procedure asked me about pain (none) and warned me to lie still while the x-ray machine took a picture of the placement of the port and catheter.  I even started to feel halfway alert at the end of the procedure - not enough to drive a car or post a blog entry, but I was no where near the inebriated state that usually goes with post surgery.

After I was wheeled back into the radiology  I was unhooked from all the IV bags and such and was given time for something to go wrong.  At each stage after surgery or major procedure, patients are watched carefully by the nurses for a time to ensure that nothing was unplugged or sewn shut that shouldn't have been.  During that time I joked with a nurse that pouring some coffee into the catheter in my arm would speed up the recovery period - and she got me a cup of coffee!  I have nothing but the highest praise for the the staff at Lakeland Regional Medical Center.  I'm sure they've got their professional credentials in order, but they also do a splendid job of making you feel as comfortable as possible during a trying time.

After the appropriate amount of time in the Interventional Radiology waiting area, I was carted back to the room with my clothes.  More waiting for something to go wrong, and the catheter was removed from my arm.  I was officially freed from the hospital!  On the way home I simply felt tired, not the usual groggy fading in and out of consciousness state I usually have after surgery.  I even felt well enough to help Leslye prepare lunch when we got home and resolved to stay awake that entire afternoon.  Later on though, I decided to take a nap (for about a half hour) and ended up sleeping the rest of the afternoon.  Oh well.

Update 2/27/11

Someone suggested that while I was there, I should have gotten a Chick Magnet installed.  Now why didn't I think of that?!

Call me Cy

...for Cy Borg: a cybernetic organism.  That is, an organism that has both artificial (the chemo port) and natural systems (me).

Got a call from Paula, one of the chemotherapy nurses, to schedule the port implant.  Have to be at the hospital Friday at six-dark-o-clock in the morning. 

The hospital said to plan on it being an all day affair, though Paula said they don’t like to commit to any specific length just in case all the operating rooms are all filled up with more urgent cases ahead of me.  The average work time for a port is around 30-45 minutes plus the the usual pre-op insurance form filling and post-op anesthesia fog.   I’m counting on being there until noon.

Also got a call from the insurance company offering me the option of having a "case worker" for the duration of my treatment.  I don't mean to sound unappreciative, but considering all that's happened so far, the offer has come a little bit late in the game.  I had a case worker for my transplant a few years ago and again, not to be rude, but it didn't help or hurt one way or the other - just another person to keep in the loop.  I politely declined.

On the other hand, the fact that the insurance company is aware of my impending chemo and RT is good, because they've been notified and have seen fit to approve my treatment!   

It's The Little Things That Make A Difference

Today’s lesson is about (a few of) the side effects of surgery.  I certainly can’t complain about my overall health concerning MCC – I can work, I’m in no real pain and the prognosis is hopeful, but as with anything it’s the little things that count.  So for the sake of completeness for those who haven’t had any surgery (or at least not had surgery of the neck), here some surgical side effects to watch out for.

My “big” problem now is mouth weakness.  I was warned at the outset that because of the location of my tumor, (toward the back of my right cheek, about even with the bottom of my earlobe) there was a small chance that a nerve would be severed, a motor nerve that controls the side of the mouth, which would leave me with a droop at the corner.  Fortunately, this didn’t happen for the right neck surgery, but since the left neck surgery, there’s a motor deficit at the left corner of my mouth.  It’s not really a droop, and I haven’t asked a doctor what’s exactly wrong, but it involves the muscle that pulls my lower lip down away from the teeth, leaving me with a lopsided grin – sort of an anti-droop.  It also puts that part of my lip near the path of my upper and lower teeth during chewing, resulting in several good chomps to that that area.  This causes Leslye no end of amusement, so I kick her shins under the table to keep things even.  It was alarming at first to have the fatigue around my lips and the anti-droop because it causes me to stumble over words if I talk a long time.  These nerves may or may not grow back or they may grow back incorrectly.  So far, the people I mention this to have been kind enough to refrain from commenting on what a blessing this will be for them, but I read out loud to Leslye most nights for exercise, so I should be up to prattling speed shortly.

The neck surgeries also cut out some feeling in my neck and face.   Nerves were cut that provide a good deal of sensation to the right side of my face and ear, under the right side of my chin and neck, and upper right shoulder;  the numbness on the left side is limited to mostly under my chin.  I’ve gotten used to it, but for the longest time it felt like my shirt was unbuttoned and coming off my right arm.   I’ve also got a sore jaw.  I never expected this, but thinking about it, it makes sense: the surgeon cut through and around several neck muscles and I’m sure there’s an imbalance that’s going to cause problems for the untouched muscles that are used to having everyone pitch in for chewing duty.   

From what I understand, the nerves will eventually grow back.  Depending on where and what was severed, this can take anywhere from 6 weeks to two years.  For me, having the nerves grow back is the most irritating part.  After the initial pain of having the incision made, the nerves in that area that haven’t been damaged are actively reporting a surgical incision; this fades after a week or two.  After that, the nerves that have been cut or damaged have regenerated enough to start sending signals to my brain.  The signals are not necessarily correct, but they’re constant.  The formerly numb parts of my skin become sensitive to touch, making it uncomfortable to have anything (like clothing) brush against it.  This is quite often accompanied by random pricks, pinches, tingling and itches (that can’t be scratched!) that occur over the numb areas.  There have been several times where I’m sitting quietly in front of the computer or TV when suddenly I’ll exclaim “Ouch!” for no apparent reason.  There is a reason of course: somewhere, two nerves are growing closer and closer together when suddenly – snap! – a spark jumps between them right before they connect.  This is when I get pinched by a regenerating nerve (or so I like to imagine).  Pain killers don’t touch it, but for me, it’s more of a constant nuisance rather than debilitating condition.

Which brings me to the last complaint: fatigue.   From simply a physiological standpoint, surgery is stressful to your body and it takes a lot out your body’s energy to recuperate.  It usually takes between four and six weeks to get back on your feet fully after a major surgery.  Additionally, there’s the drain of getting used to all these new sensations, the drain of frustration from not being able to move the way you used to,  the drain of low-level but constant discomfort and the drain of stressing over everything mentioned above.  This last is also called “sick and tired of being sick and tired.”

Though I’m much better about it than before, being SATOBSAT is by far the worst part of this.  I’m not much for sitting of front of the TV and would much rather be actively recreating then passively vegetating.  When forced to take it easy, I start getting irritated (and irritating) about all the fun things I’d rather do but am too worn out for;  I’ve lost half my weekends to afternoon naps for the past month.  Exasperating?  Yes.  Necessary?  Yes.  Fortunately I’ve learned that the only way through this is to give in and sleep through it and observe that so far, the world seems to be staggering along just fine without me.

2/24/11 Update:

At my regularly scheduled dentist appointment, the dentist said that he didn't think that any nerves to my mouth were actually cut, just stretched.  This could account for the fact that even though my right neck surgery was more extensive than the left, it was the left side of my mouth that sustained damage.  He said that the affected nerves would probably repair themselves, though it could take up to two years. 

I'll let you know what happens in a couple of years.