Wednesday, March 28, 2012

Ten Down. One-third of the way there

Disclaimer: This post is being written by Anita, Jim's wife. I know many of you are probably wondering what is going on, now that Jim has had 10 radiation treatments. He was too tired to dictate anything tonight, so this will be an update of sorts for now.
So now we were all set for radiation treatments - the tube was in and the mask was made. The first treatment was Thursday, March 15th. He has a total of 30 treatments to go through, ending on April 25th.

This first session took at least an hour. They had to recheck the mask, make sure the machine was set up for him, etc. I don't know all that goes on in that room. He heads down the hallway to change into the gown (he gets to keep his jeans and sneakers on). I wait out in the waiting room. At the first session, the dietician met with me for like 20 minutes to make sure I knew enough to keep him well-fed. I imagine I'm not like a lot of the spouses she meets - I actually cook, and do it quite well. I know about combining protein grams, healthy eating habits and buying organic. She was Indian (now THERE is a culture than knows how to eat well without fatty meats!) and we got along fine. Yes, he has the tube but the goal is to keep him eating by mouth for as long as possible.

Jim drove up and drove back. We stopped by Bob's Giant Burger on the way home and he got a huge chocolate milkshake and an order of fries. It all tasted quite yummy to him.

Unfortunately, that didn't last long. After the 3rd or 4th treatment, he started to notice that there was very little difference in flavor between the food he was eating and the napkin sitting in his lap. We knew this was coming; there's not much you can do about it.

The doctor sees and evaluates the radiation patients on Wednesdays. Jim's had two such reviews and both times the doctor has been pleased with how everything is going. This also gives Jim a chance to ask any questions he's been thinking about over the past week.

So far, there isn't any real redness or soreness to the neck area. If you didn't know he was undergoing radiation, you couldn't tell. Seriously, I thought he'd be all red now. Maybe that's yet to come. The biggest challenge is food and eating. I've stopped giving him ultra-tender meat in favor of ground meats. (I'll have to post my recipe for mini chicken meatloaf with curry-leek sauce).  :-)   Still, it's hard for him to eat. We look at it like it's a J-O-B. One of Jim's favorite sayings to me when I'd complain about work was, "That's why they call it WORK. If it were fun, they'd call it FUN." So we look at mealtime as a job that needs to be done. He still has the 2 cans in the morning. I think we're probably heading for more cans and less food here pretty soon.

He's still driving up and back each day - 60 miles round trip - but he LIKES to drive. I sit in the co-pilot seat with my headphones on because I'm just not a fan of talk radio. But hey - the guy is going through some rough stuff right now. He should be able to listen to whatever he wants, even if it is a bunch of spoiled, whiney-ass lunatics. Some days, we play drum corps CDs very loud. That's fun! I put the headphones away when that's on. I wonder what the people in the cars next to us think when we roll up to stop lights. (In fact, the Hawthorne Caballeros are playing on my Zune right now as I'm writing this!)

He's pretty tired after each treatment and usually naps once we're home. The sessions are now all at noon, so this works out pretty good. After a nap, he will watch TV and maybe read his email. In short - he's taking it pretty easy.

We got out last Saturday for errands and a quick trip to the winery. I don't know if he'll feel like getting out of the house every weekend, but we'll take what we can.

So that's how we're doing. We're one-third of the way through the treatments.

Sunday, March 25, 2012

The Feeding Tube

It turned out I was going to need one more operation - to place a feeding tube into my stomach. The official name for this tube is a Percutaneous Endoscopic Gastrostomy tube, or PEG tube.
PEG tube

Often with my kind of cancer and radiation, the mouth becomes so sore that it's a real chore to eat. The solution to that is to have the tube put into the stomach before the actual radiation starts. This made sense to me, so I had my tube implanted on Tuesday, March 13th. This was an even easier surgery - I didn't have to go under general anesthesia, it was more of a "twilight sleep." The surgery was just a little over an hour and I woke up in recovery feeling fairly good.

I stayed overnight in the hospital one night. That first night, I didn't have anything to eat at all - not by mouth or by the tube - it was all intravenous. The next morning, they tested out the tube with a half-can of special formula designed for these types of tubes. That went down fine. A few hours later, I got a nice surprise - lunch! Egg salad sandwich and peaches, and it tasted really good. Around 3 in the afternoon, they gave me another feeding of 1 can through the tube. No problems, no nausea, so I got to go home a couple of hours later.

(NOT my tummy; tube looks like this).
Life with a feeding tube is a bit different. I "eat" 2 cans of the formula via the tube in the morning. It takes time to get the supplies together: food, syringe, water for flushing, towels, etc. so I get it out of the way in the morning while I still have the energy. I do this while lying propped up in bed. I also sleep in my bed at night. No more nights in the chair.

One of the nurses asked me while I was still in the hospital if I had an actual hospital bed at home. I told her no, and she seemed a bit concerned, but I found that the trick was to find a spot where you're comfortable. I wasn't sure I could do this at first, but I developed two different reclining positions in the bed using the decorative pillows and my own regular sleeping pillow. You just have to experiment so you get comfortable. I prop myself up higher when I'm feeding. They want you to be at least a 30 degree angle when you feed, but it's easier for me to be higher up. I'm still reclined but not practically lying down.

I had two in-home follow up visits with a nurse to check on the tube. She was happy with how my incision was healing and how I was doing with the tube feeding.

Radiation and Possible Chemo, Too

Up to now, I had been going on the assumption that the next stage of my treatment would be radiation. But when I met with a new doctor, the one who would be physician for the radiation, he raised the possibility of doing chemotherapy in addition to the radiation. Only two of my neck lymph nodes were cancerous, but they were fused tightly together. It was hard to tell if cancer cells had left one node and migrated to the other, or they were just stuck together without any migration. All the studies pointed towards chemo not being particularly helpful long-term when dealing with only two nodes and not clearly knowing what the cancer did.

I met with a chemo specialist and talked about it with her. Chemo would take care of any cancer that had migrated anywhere else in my body, whereas radiation would only take care of my neck area. Since there was no evidence that the cancer had spread anywhere, my survival rate would not improve much with radiation and chemo. I always thought that I would want the absolute best chance of survival I could get, but the side effects of chemo are much worse than radiation. Both doctors assured me that the difference in survival rates was negligible. I decided to go with radiation only. I was given enough information that I feel I made the right decision. Still, I feel that if I ever get cancer somewhere else I may question that decision. Oh well. Survival rates for either decision, I might add, are quite high with this type of cancer.

This is like my mask
In order to make sure I don't squirm during the treatment, they have this wonderful device called a mask. It's made from a weave of thermal plastic that fits over your head and shoulders and nails you motionless on a table - referred to from here on as "the plank" It's an interesting piece of hardware. The woven thermal plastic comes in a frame in the shape of a human head and shoulders. This thin, woven plastic becomes flexible when put in warm water; you close your eyes, don't move (you're lying on the plank), then they push it down on your face and screw it in to the plank. It feels wet, warm and very confining. The key is to relax. Don't fight in it, you're going to be there longer than you want to be but it doesn't hurt. It's only done like this once; to make your own uniquely shaped mask that is used for your radiation treatments. It should be noted here that they also tie your hands down to the bottom of the plank where your feet are, so that it pulls your shoulders down away from your neck. This makes the mask better conform to your body for treatment.

In order to cool the mask quicker, the tech puts cool, wet cloths on it while it's still on your face, to speed up the process. Once it is sufficiently hard, he releases you from the mask, making you feel very much like Hannibal Lecter. He then helps you sit up to relax and takes the mask over to the sink for more cooling. As he did this, I made the comment, "Well, that was very interesting." He laughed. I think that relaxed us both. I said, "I bet you get a lot of different reactions to that."

He laughed again. "Yes, I do."

Once it was hardened, he put the mask back on me again to do the 360-degree X-ray of my head and neck. This was even more confining than when it was warm and wet because it was hard. No sooner than it made me feel a little panicky, he told me to lift my chin, and it fit perfectly. You can't open your eyes because the mesh is pressing tight on your eyelids (eye holes would be added later). But I was relaxed, reminding myself to keep breathing deep. I almost feel asleep at one point.

I started to question my ability to wear that thing for 30 sessions, but as I'm writing this I've completed seven sessions, and it's pretty easy to get used to. I just keep reminding myself to breathe deep and relax.

The Plank

Sunday, March 18, 2012

Partial Neck Dissection, February 10, 2012

The next step was to have a partial neck dissection to remove the cancerous lymph nodes in my neck.

Prior to surgery, the surgeon went over all the potential challenges. There are a lot of nerves in the neck - nerves to the arm, the diaphragm, the voice box, and so on. It was a sobering thought to think that I might not be able to raise my arm above my head, or worse - have difficulty breathing should anything go wrong. I trusted my doctor - this was the same surgeon who has operated on my tongue. He was highly regarded among his colleagues at the hospital as being extremely knowledgeable in the field of head and neck cancers.  But still - I couldn't help but wonder... would I be that one exception to his stellar track record?

The second surgery occurred on February 10, 2012. As it turned out, it was a LOT easier that the first one by far - I only stayed in the hospital one night. The surgery itself took almost as long as the other one, though - almost 4 hours. I only had cancer in two small lymph nodes, but the surgeon took a bunch of the surrounding nodes to make sure it hadn't spread further. So once again, the surgical team had to wait around for the pathology to come back before they could finish. All in all, they took between 30 and 40 nodes; we have between 500 & 600 in our bodies and there are a lot in the neck area. All but two were free of cancer, so this was good news.

The doctor did encounter one surprise: the nerve that normally runs along the lower jaw was not where it was supposed to be - it was lower down in my neck area - right in the way of where he needed to operate! So he moved it back to where it was supposed to be.

This time, I woke up in the regular recovery room with no breathing or feeding tubes and was soon put into a regular room. I left the next morning, after chowing down on a breakfast of real food: scrambled eggs and french toast. On the way home, I looked at my watch and realized that the team over at the winery where I worked on weekends would be right in the middle of setting up for that day's tastings. I decided to surprise them with a quick visit. It felt good to be in a place I looked forward to going to and being around my friends. It's good to get out and try to do the normal things in your everyday life, even though you're going through this process. You tend to feel isolated if all you do is see doctors.

I didn't realize it when I was in the winery, but the whole right side of my face was numb. I discovered this when I got home. I sat in my easy chair and leaned on my hand and couldn't feel it! WTF?!! The doctor had warned me that I could have some numbness.

In addition to the expected bandage on the incision, I had what is called a "J-P drain." A small flexible tube was under the skin right about where my collarbone was; drainage from the incision dripped out of the tube and collected in a palm-sized, bulb-shaped container that I emptied a couple of times a day. There wasn't much liquid coming out, so I was able to go back to the doctor on Monday to have it removed. The sutures used on my neck were internal, so there was nothing there to remove.

I was rather disappointed to discover the surgery had set me back a week or two on what had been fairly regular progress on getting back to normal eating. It was hard to swallow again, and I had to use the suction machine a few more times. I went back to eating softer foods, too. I really don't think I want to eat cottage cheese ever again.

But over a period of a few days, it started to improve, little by little each day.  Unfortunately, wine tastes like medicine and alcohol. Blech! The areas of numbness and tingling on my right cheek, ear and part of my head are steadily shrinking. I was told it could take months, or even be permanent but a lot of the tingling was gone in a little over a month. Right around my jaw line is still pretty numb.

Over the course of the next few weeks, we took family out to lunch, visited friends and stopped by the winery a couple of more times... just to let them know they hadn't cut the sarcasm out of my tongue. Even though I sound like Mr. Magoo.

Now it was time for the third phase of my treatment - radiation therapy.

Saturday, March 17, 2012

Base of Tongue Surgery, January 16, 2012

I got married on January 16th, 2011.
(Details can be found on my wife's website at

One year later, I was being wheeled into the operating room for the first of two surgeries to remove the cancer from the base of my tongue. This first surgery took nearly five hours, but the surgical team spent a lot of this time just waiting for pathology reports to come back. They removed the tumor and a little of the surrounding tissues, sent it to pathology, waited, and got back a report showing that there were still cancerous cells present. So they removed a bit more, sent that to pathology, waited some more and finally got back a report that all was clean. In addition to the cancerous tissue, they had to remove my right tonsil because it was pressing up right against the tumor. 

I was wheeled into my room in the ICU at 4PM; the surgery had started at 9:30AM. I had a feeding tube in one nostril and a breathing tube in the other, and I was heavily sedated. That was Monday.

I woke up on Wednesday the 18th. At first I thought it was still Monday - I could see the clock reading a little past 10. Was it possible that they had done everything in a little over an hour? At that point, I had a coughing fit that dislodged my breathing tube. I won't go into gross details, but pretty soon the breathing tube was out and I was awake and breathing on my own. And I learned that it was Wednesday! I had no idea that my wife had visited me the day before.

I stayed in ICU until Thursday, and finally left the hospital on Saturday with the feeding tube still in place.

That first week home was difficult. It was next to impossible to swallow anything; liquids came right back out my nose which was very frustrating. At least I had the feeding tube in my nose. I "ate" by pouring small cans of a vanilla supplement drink into a large syringe attached to the loose end of the tube. I held up the syringe and liquid gravity-fed from the tube up through my nose, down my esophagus and into my stomach. It sounds weird, but it wasn't that difficult. I didn't have any real problems with it. Eight cans a day - that was my food. I also munched on ice chips.

I took liquid antibiotics and liquid hydrocodone for pain via the tube as well. I can tolerate a fair amount of pain but I have to say that wasn't the biggest annoyance I had. The pain was manageable. What drove me up the wall was not being able to swallow, not even my own saliva! I had to get a suction machine to help remove the excess.

I had to sleep in a large overstuffed chair. I tried lying in bed propped up on pillows, but I began choking the minute my head drooped forward. I became a cat-napping expert.

All of this started to wear thin after a short time. I wanted to eat again, so I starting with soft foods like cream of wheat, applesauce, apple juice, and jello. Ice cream and pudding didn't work too well at first - they tended to make me produce more saliva which was the last thing I needed. Food would often "stick" in my throat - I wondered if I had damaged my vocal cords during the breathing tube episode. I saw my surgeon on the 25th, four days after being home. He said everything was progressing well and to be patient.

I've never really been known for my patience, but I started to see small improvements every day. I kept the feeding tube until February 1st, but I had stopped using it by the time it was finally removed.

That night I slept in a bed for the first time in weeks. It was wonderful!

I finally felt that I had turned the corner, and started eating a greater variety of foods, including soups, chicken and gravy, scrambled eggs and even a hamburger (without the bun). Liquids were still a challenge and often came right back out my nose, but there was no question that I was improving.

Before I knew it, it was time for the second surgery to remove the cancerous lymph nodes.

Thursday, March 15, 2012

Welcome to my blog - an HPV Cancer Diary

Hi and welcome to my blog.

My name is Jim, and the purpose of this blog is to document my journey as I go though treatment for squamous cell cancer of the mouth, in particular the base of the tongue, as a result of HPV.

I know I certainly didn't plan on this happening in my life, but it is what it is. My purpose in writing all of this is to share my experiences with anyone else who might be going through the same things as I am.

Some background:
I am 65 years old, male, Caucasian, and I live in California. I am not a smoker - never was. I do enjoy good wine, but I'm not what they call a heavy drinker. I represent the new norm of throat cancer patients, according to one of my doctors. It used to be that 80% of squamous cell cancers in the mouth were caused by "hard core" smokers and drinkers. Now, it's like 80% are cause as a result of HPV, or the Human Papillomavirus.

This all started with a lump on my neck that I noticed in September of 2011. It wasn't painful, but it was noticeable. After a course of basic antibiotics didn't clear it up, I was referred to a head and neck specialist. He biopsied the lump and on December 7th, 2011, I learned that it was cancerous.

Lesson Learned: Don't EVER dismiss a lump. Have it checked out.

The next step was a PET scan, which showed nothing. I remember getting the call from the doctor - "you have no source." In other words, they could not find a source of the cancer. Finding cancer in the neck lump only meant that there were cancerous cells in my lymph nodes. That wasn't the original source. Not finding it could mean that I would have to endure a lot of chemotherapy to kill the primary source of cancer, wherever it was. Not a pleasant thought.

The next step was an MRI, which was also forwarded to another specialist. He was the one who finally saw something that concerned him, and biopsied a small spot at the base of my tongue. That proved to be the source of my cancer.

Lesson learned: Just because one test doesn't show anything, go for another. Ask to have your results shown to a specialist if the first doctor is not sure. Luckily for me, they did this anyway.

The tumor at the base of my tongue was small enough that it could be removed surgically. After that, I would most likely have to have a course of radiation. If I didn't want surgery, I could opt for radiation and chemo, but the side effects of that option sounded horrendous. I decided for the surgery. Actually, it would be two surgeries - the first to remove the tumor and the second a few weeks later to remove the cancerous lymph nodes.

In my next post, I'll talk about my surgeries.