The Binary Biker

I’m sitting in a big La-Z-Boy right now, an IV in my left hand and my chemotherapy in mid-session. It’s been a long day and I’m a little tired emotionally. Let me start from the beginning.

At 7:50am this morning I had my first official radiation treatment. It was pretty much as I described it in my earlier blog posts. I was strapped down, face mask was clamped to the table, handcuffs and leg restraints were put in place.

I had nothing to do while lying there, so I timed the blasts of radiation. In all, I received 13 separate doses of radiation. They were all 25-30 seconds in duration save two – which were 5-7 seconds in length. Apparently there is only loose correlation between the time it takes to give the dose and the actual dose itself. Still, I received a healthy dose of radiation. As my brother told me on the phone a few minutes ago, “You’re all Hulk now, aren’t you muthafukker?”

After my Hulk treatment, I had to see the doctor who promptly informed me that the medicine necessary for my throat to handle and heal this radiation was NOT approved by my insurance company. I have great insurance through United Health Care, provided by my company 100%. I pay very little out of pocket during my visits and nothing, not one penny, is deducted from my paycheck. My company covers the entire thing. How awesome is that?

Still, to find out that my oral medication, Caphosol, was not covered is a huge inconvenience. I need to take 4 doses a day for 7 weeks. A week dosage will cost me over $200.00. My radiologist is providing me with sample while we go through the appeal process with my insurance company. I will not go without, but it still annoys me.

I was told that since radiation is cumulative that I will probably be able to enjoy Thanksgiving dinner but definitely not Christmas dinner. I just shrugged. What will be will be. This is temporary.

So I went over to my medical oncologist after radiation. I was scheduled for 9:00am chemo – a 4-6 hour process. (note: I have been here 4 hours 45 minutes so far and it appears I will be here another 45 minutes).

I have another insurance issue here as well. Remember in my last blog I said that Cisplatin will make me EXTREMELY nauseous for day as after treatment? The primary medicine to counteract that was denied by my insurance company! The drug, called EMEND, is authorized only once every 31 days by my insurance company. Why? I have no idea.

Since my chemo is once every 21 days, the insurance company denied the script for EMEND. I was supposed to have it filled before coming here today. The staff had to give me my first dose through IV while they got on the phone and fought with the insurance company.

I am also the only person they have ever seen who has a “reaction” to EMEND given intravenously. It says there “may” be entry site reaction, but they had never seen it before. Until me. Once they started the EMEND, my arm caught fire where the IV was going up 6 inches. The pain was severe but I had to wait it out.

So the good news is that I got my EMEND scripts approved. I can go get it filled now. I need to take 2 more doses this week to give me continual coverage. I had been afraid that I would not be able to get it. This drug costs over $500.00 for 3 pills!

It’s been pretty uneventful beyond that. I did learn that my dose of Cisplatin is so high that I will almost certainly lose my hair. I am upset by this – but what can you do? It will grow back – but I really like my long hair. Still, I may get temporary membership in the club John and Eric are in – the bald man’s club. How exciting – we can meet twice a month and discuss how to best shine out scalps!

I can also expect to be VERY fatigued in the next couple of days. The nadir of the treatment, between days 10-14, is when I will be VERY susceptible to getting sick. I need to be very careful.

That’s it. Day 1. Seems pretty tame – I think my chemo side effects may be significant in the next day or so. I will blog about them when it happens.

I’d like to take a moment to say thanks to all of you who are rooting for me. All of you who call, write me, or otherwise give me your support. Carey is, of course, my angel. I couldn’t do this without her. I can’t put into words how much I love her.

Thank you all. I am tying this up quickly because they gave me a diuretic and I have to pee so badly my eyes are floating!

I had my “big” meetings with my radiation oncologist and my medical oncologist today. We established my treatment plan and did most of the prep work necessary to get me started. As I have said before, I will have both chemotherapy and radiation treatment. The details of this are below:

Radiation Treatment
Treatment Start: November 10th, 2008
Number of treatments: 35. 15-30 minutes 5 days a week for 7 weeks.

So today I was fitted for my “mask.” The mask is literally a perfect mold of my face, designed to clearly mark where the radiation treatments will be and to hold me completely still during treatment. It was most uncomfortable and VERY claustrophobic.

Basically, there is this plastic material that looks like netting. It is warmed up in a heater and with hot water. When the optimal temperature is reached, it is placed and pushed across your face to make a perfect mold. A finished mask looks like this:

Once the mask was fitted to my face and while it was still malleable, a Popsicle stick was pushed into the “mouth” of the mask and, therefore, into my mouth. This was done to force my tongue into a “down” position so the radiation could be targeted properly.

What this means is that while I have the mask on I have to have my mouth open and I cannot swallow. Try to lie with your mouth wide open for more than 2 minutes and not swallow. The saliva fills your throat.

I had to do it for 45 minutes today. And I’ll have to go it 35 more times when I go through treatment.

This mask is LOCKED down to the table while you go through treatment. I cannot move my head or close my mouth, or swallow.

And that’s not all folks. I also have to have restraints on my arms to PULL my shoulders down. My shoulders are so wide that I need to have them tied down, along with my feet, to ensure I don’t get in the way of the radiation machine and to ensure that I don’t move even an inch during treatments.

Sounds a lot like torture, huh? It’s no walk in the park. 35 times, for 15-30 minutes, I will be strapped to a table, unable to move, unable to close my mouth, unable to swallow, with pressure on my arms and feet.

In addition to the uncomfortable necessity of being immobilized for treatments I can also expect some pretty severe throat issues. I may lose my ability to swallow through the treatments. I may swell up inside my throat and need to have a feeding tube for a short period of time. My scar may swell up to 2-3x it’s current size. I may permanently damage my salivary glands and have perpetual dry mouth. My taste buds may be affected (if my tongue gets hit inadvertently).

Crazy stuff, huh? This picture is what a severe radiation burn on the OUTSIDE of the neck looks like. This could happen to me. Imagine what the inside of her throat looks like!

Chances are I’ll be much less affected than that – that’s a worse-case scenario. Still – I will endure what I need to endure to rid myself of this cancer.

I also have to go back to my ENT (surgeon) to meet with the speech pathologist. They expect me to have trouble swallowing as treatment progresses and this pathologist specializes in assessing and helping a patient such as myself through the experience.

Also, I have to get daily fluoride trays to protect my teeth. Radiation is very bad on the teeth.

Chemotherapy
Treatment Start: November 10th, 2008
Number of treatments: 3. 4-6 hours every 3 weeks.

I will be given a drug called cisplatin for chemotherapy. Cisplatin is a chemotherapy drug that is given as a treatment for some types of cancer. It is most commonly used to treat testicular, bladder, lung, throat, stomach and ovarian cancers.

Cisplatin was the same chemotherapy drug given to Lance Armstrong as he underwent his treatments. It is very effective when used in conjunction with radiation against throat cancers.

The biggest side effect of cisplatin is that it is EXTREMELY toxic to the kidneys. For that reason, my chemo won’t be a 30-minute ordeal like most sessions are. No – I will be in a chemo chair for an entire day for each treatment. The only way to protect the kidneys is to lessen the amount of time the drug resides in them. So I will be given copious amounts of intravenous liquids – meant to make my kidneys work overtime to push liquid through.

The other major side effect of cisplatin is that, of all cancer chemo drugs, this one causes sever – extreme – nausea. I have been prescribed zofran and other anti-nausea drugs that will help me manage the nausea. Still, I can expect some severe sickness as a result. These usually last 2-5 days after the chemo treatment.

Of course, fatigue is a big side effect. Other than that, side effects MAY include:

• numbness or tingling in the hands and feet
• ringing in the ears
• loss of hearing of high frequencies
• hair loss
• infertility
• taste changes

The end result of all of this is that I can expect some weight loss, a high level of morbidity (side effects), and a lot of discomfort. It’s not as bad as all that, though. This too, as they say, shall pass. It’s temporary and necessary to get through this.

I know I have imparted a lot of scary stuff herein this blog. As I said before, I will endure what I need to endure to rid myself of this cancer. This is just one of those hiccups in life that one needs to persevere through. I am not putting my life on hold because of this. This IS my life – I cannot wait for it to be resolved before I start living my life. The time to live is now. Today. If we all waited for some crisis to end before we started living we’d look back and realize we missed our entire lives.

I looked around the “chemo room” at my oncologists’ office today. It was filled with men and women, mostly a lot older than me, getting their treatments. One lady was knitting. Some were sleeping. Most were talking and laughing. I had no idea that chemotherapy was a social circle. Men were swapping jokes. Women were gossiping. I was so heartened to see these men and women battling for their lives – but still living, laughing, and not letting life pass them by.

These next few weeks will be rough – but I’ll get through them. I am not alone. I have fantastic medical care. I’ll have company during my treatments. I have a wonderful lady in my life and the most amazing children in the world. They love me and I love them – and that’s my reason for getting through this. Keep me in your thoughts and prayers. As I begin treatments I will keep you all posted. Heck – I’ll be 6 hours in a chemo chair – I’ll be blogging my myself silly.

It’s been close to a month since my surgery and I am just starting to deal and cope with the reality of my changed body.

It all started a few days ago. Inexplicably, I began to have feelings of anxiety and doubt about myself. They were general and non-specific and I in no way associated the feeling with my appearance. I was grouchy, uninterested in verbal or physical intimacy, and withdrawn.

Two nights ago, it hit me like a ton of bricks. Carey was lying next to me, sleeping soundly, and I was wide awake. The elephant was sitting on my chest; my personal anxiety signal. I got out of bed and went into the bathroom for a sleep aid. When I got in there, I realized I was not looking at myself in the mirror. Intentionally. I would look away when I slid open the medicine cabinet. I would look down at the sink when washing my hands. I didn’t want to look at myself! At my face in particular.

I’m a smart guy. I hadn’t done any research on it, but I knew immediately that I was having an issue with the way I looked. It was 1:00am, but I sat down at my computer and started doing a little research. Apparently, body image issues after head and neck cancer surgery is not all that uncommon.

Think about it. I have a 10-inch scar going across my neck. My neck is disfigured because of the muscle the surgeon was forced to remove. I look different. It’s not a disfigurement I can readily hide. My face/head/neck is one of the most noticeable parts of my body. People talk to my face. We are trained from birth to notice and recognize faces. We, in large part, associate our very identity woth our faces.

It’s no wonder I’m having an issue. My disfigurement is extremely minor. In my research I read about some truly sad cases where head and neck cancer survivors lost facial mobility, lips, parts of the face, etc. I have nothing to complain about; I am very fortunate that I just have a small part of my neck missing. To me it’s a glaringly obvious disfigurement but others don’t really see it as plainly as I do. Really, I look more “chiseled” on one side than the other. And it’s covered with my long hair. The only visible sign that I can’t readily hide is my scar – and I REALLY like the scar.

Still, I AM changed. And I have to deal with it. Now that I have recognized what has been bothering me, I feel a lot better. I am a cancer survivor. I have battle scars. They are nothing to be ashamed of – I just need to learn to look in the mirror again and like who I see.

Carey has been amazing. I have made it my personal mission to hold back nothing from her. Many people would try to deal with this privately I think – but in my case that would be the wrong thing to do. I would let it fester and become something ugly inside me. So I shared my issue with Carey in nauseating detail.

She didn’t flinch, trivialize my issue, or turn away. She embraced me and accepted it completely. It’s no wonder I love her so much. It really helps, people, to have that kind of support.

I may not like who I see in the mirror today, but because of my determination and the love of my family and support group I know that the day where I accept the new me is not far off.

I learned this weekend one of the side effects of being completely numb on the left side of my face. I shower daily – sometimes twice a day. I am meticulous about washing myself, especially my face. So I get a good thick lather on my face and in my hair with the shampoo. Then I wash it out.

The problem is that I am so hesitant to hurt myself that I gingerly wash the soap off the left side of my face. And when I towel dry, I very gingerly dry my left ear, hair on that side, and cheek.

I also have long hair. So when I comb my hair after I shower it covers my left ear.

Now that you have the background let me tell you what happened on Sunday. Carey and I were driving to her parent’s house when I got one of those inexplicable itches in my ear. Happens sometimes as my nerves regenerate.

So I reach up to scratch my ear and a fingerful of dried, caked, shampoo and soap comes out of my ear. It was so gross. My ear had dandruff. I was embarassed, but I reached up to clean it out – there was SO MUCH that I couldn’t get it all. I had to go into her parent’s bathroom when we got there to clean it out.

So lesson learned is that I can’t afford to be TOO gentle with my left side just because I can’t feel it.

This also applies to shaving. I used to be a “shower shaver.” I would lather up in the shower and shave by feel. Now, since my face is numb on one side, I can’t risk slicing myself open. I have to shave in the mirror. Very odd.

It’s the little things that get you sometimes. I never had any inkling that this would be of the things I would have to deal with.

I had my meeting with my radiation oncologist today. Went very well. Basically we reviewed the results of my surgery and discussed my treatment plan going forward. I’ll just make a list of bullet points because I have a lot of little points to make:

• I go back on the 31st of this month to get “simmed.” Getting simmed means a couple of CT scans and getting a face mask molded and marked. marking the mask means I won’t have to be marked in person. I will don the mask for each treatment and the marks on the mask will guide the radiation. I will start radiation treatments a few days after that.

• There is a small, very small, risk of the radiation affecting my brain stem and causing a stroke or of permanent jaw bone damage . This is so unlikely that the doctor even hesitated to bring it up. He knows me, however, from our previous meetings and knows I want ALL information. The big risk is my teeth. He is proscribing a bunch of treatments and fluoride molds for my teeth to protect them through this.

• He will take great care to protect the major salivary glands on the right side of my face as he will definitely be hitting the ones on the left side.

• I can expect some redness on the outside of my face as treatment progresses.

• I can expect to have severe difficulty swallowing – pain maybe worse than the tonsillectomy itself. I am not happy about that.

• I have been told to “pack on” the pounds because I will almost certainly lose weight through this.

• I will have radiation 5 days a week for seven weeks.

• I will also have chemotherapy at the same time. Most likely that will be 1-2 times a week, but I need to meet with my medical oncologist to determine that schedule.

• The combination of radiation and chemo is very effective against squamos cell carcinoma.

• Radiation will be targeted on the right lymph nodes as well as there is a 20% chance there are microscopic cells there as well.

• The tonsillectomy removed the primary but there is almost 100% certainty that more cancer is there. A tonsillectomy is a glorified biopsy and not a deep invasive removal. It’s too close to the carotid artery for that. For that reason, the doctor is sure all the cancer was not removed and hence, the need for targeted chemo and radiation.

• I can expect some side effects such as weakness, dry mouth, difficulty swallowing, etc through radiation.

• I can expect to be immune-compromised during chemo and side effects are the side effects we’ve all heard of. I may get sick. I may lose hair. Only time will tell.
  

Anyway – that’s my status update. I should not miss too much work (depending on the side effects) – but the timing of the daily radiation/chemo still has to be worked out. I am trying to get early morning treatments, but it all depends on what the schedules look like. I may have to settle for late afternoons.

Tomorrow is my first post-op visit with my radiation oncologist. This meeting, I am pretty certain, is to begin planning my treatment plan going forward. My research on the subject tells me that after this visit I will probably get another CT scan and maybe another MRI. This will be done to fine-tune the radiation targeting process. I can expect radiation treatments to start in the next 3-4 weeks.

Since my primary tumor was found and removed (my left tonsil) we know the areas pretty well where I will be targeted. My neck will be “marked” in a number of places with ink that will stay on despite showers and other attempts to remove it. These marks will be the guides for the radiation treatments.

Once all that is done, I will probably have 4-6 treatments a week for 4-6 weeks. There is a possibility I will need chemotherapy as well. Quick internet research has shown me that squamous cell carcinoma responds well to chemo – meaning that in most cases it is very effective.

Anyway, wish me luck. I’ll post any new and exciting details as I learn them.