Cancer Free!

I had my PET Scan on Wednesday (6 months to the day that I started treatment) and on Thursday my radiation doctor said I was all clear. To celebrate I bought a Nissan GT-R. OK, not really. I couldn't slide that purchase by the wife. So instead I asked my doctor if it was OK if I went camping and caving. He didn't see any problem with that so that's what I did.

This weekend I went to Fulford cave with Sean's Boy Scout troop. The temperature dipped down to below zero at night and the snowshoeing trek to the entrance to the cave about wiped me out. The caving itself was challenging but not too tough. Hey, if 12 year olds can do it then I can do it. I took a few pictures of the camping and caving. They can be found here. The cold weather didn't cause me any more problems than I had before cancer. It was a good outing but strenuous.

The prior weekend I went skiing at Vail. I only made it until lunch and then called it a day after I almost passed out in the lunch line. I figured I had better quit while I was ahead before I got sloppy and hurt myself.

My mouth is irritated by foods with any hint of tartness, spiciness, chocolate or high sugar content. Tomato soup bothers my mouth but I can at least taste it so I have it 4+ times a week. I still can't taste much and my salivary glands continue to operate at minimal levels.

The Neuropathy in my hands and feet seems to be getting better. The Neuropathy in my chin and when I look down has not changed.

The imbalance in my hearing may also be getting better or I'm just getting used to it.

Recovery Day 113 - Happy New Year!

Happy New Year everyone. I'm hoping that 2010 will prove to be more healthy for Cathy and I than 2009 was.

My salivary glands have decreased their already pathetic output and my taste buds haven't shown any improvement. I was hoping Santa would bring me some taste buds but that didn't work out. Consequently, food is still a problem. On New Year's Eve I went with Cathy and Sean to a local hamburger joint for lunch. I ordered a small cheeseburger with lettuce, tomato and mayo. I added ketchup at the table. While it wasn't a tall burger I couldn't get my mouth opened wide enough get a bite of bun and burger. It also had close to zero flavor. The only thing I could really taste was the ketchup. The ground beef pieces also got stuck in my throat. I ate about half the patty and skipped the other stuff. Fortunately, I ordered a large malt and that kept me from feeling too hungry. I ate a few of Sean's fries but they had little flavor to me.

So what do I eat? It's still limited but here is what my normal weekday is like.
Breakfast 1175 calories
Cream of Wheat
Whole milk with Carnation Instant Breakfast Drink plus 2 tsp of fiber powder
Yogurt

Lunch 800 calories
Campbells Cream of Tomato To-Go soup
Peaches (small can)
Pudding
Boost High Protein drink

Dinner 700 calories
Cream of Mushroom soup (using whole milk)
Peaches, Apricot or Pears (large can)

A couple days ago nothing sounded good so I ate a can of corn (whole kernel, not creamed). I put a little bit of pepper and salt on it and it wasn't too bad. A lot of foods are either too difficult to eat or just taste awful - mostly due to lack of flavor. One example of awful was a Taco Bell Burrito Supreme. After four small bites I couldn't take it any more - and I was really hungry at the time.

The Neuropathy in my hands has spread to my palms. I occasionally get it in my chin too. Whenever I look down I get a shock in my abdomen that radiates from my spine to my stomach. It doesn't hurt too much and it only lasts a second. But it takes me by surprise each time.

I still get heartburn in the evening. To combat that I'm now taking Pepcid AC in the morning and Prilosec OTC in the evening. That helps, but only when I remember to take them. I sometimes still need to take a couple of Tums.

Recovery Day 88 - Nothing Exciting Going On

Nothing exciting has happened (like projectile vomiting in the kitchen) since the last update. I had an appointment with Dr Nemecek on Monday of this week. When I told him that I had refilled the prescription for Diflucan because the Thrush was back he became a little concerned. He wrote out a prescription for a steroid and an anti-biotic. That was the bad news. The good news is that he thought the ulcer in the back of my mouth was starting to heal. It doesn't feel that way to me. When I yawn it feels like the tissue in my mouth is ripping apart.

The consequence of the Thrush coming back is that the back of my mouth and also my throat feel swollen. I'm not inclined to eat anything challenging. So its back to the soups. Just in case the Biotene mouthwash had something to do with the Thrush coming back I have stopped using it. The mouthwash was helpful in preventing my mouth from drying out for about an hour so I miss it.

The Neuropathy in my feet hasn't improved but it hasn't become any worse. However, I now feel it in my pinky fingers. Dr Nemecek said it was along my ulnar nerve. On a positive note he did think that the Neuropathy would go away. I talked with another throat cancer survivor that had Neuropathy and he said it went away after a couple of months. So I have hope that mine will too.

Work is going well. The tasks are interesting and the clients are easy to work with. I'm close to billing 40 hours a week. It looks like I'll be there through the middle of January.

Thanks for checking in. I really appreciate all the prayers, emails and phone calls!

Recovery Day 69 - Tingling Feet

At my visit with my radiation doctor this past week I brought up an issue that I thought was unrelated to the cancer treatment. My feet were tingling, kind of like they were falling asleep. I feel it more when I have shoes on but it is still present with just socks on. Unfortunately, I was told that this is likely a side affect of the chemotherapy and the medical term is neuropathy. It may or may not go away and it could also affect my fingers. I'm taking a B vitamin complex as well as vitamin E as directed by my doctor.

I worked my first full day on Friday. That worked out well because the client's department was having a Thanksgiving potluck lunch. There was a good selection of food I could actually eat. I still don't have much in the way of taste bud activity and my mouth continues to be rather dry.

Cathy told me that I'm now snoring. I didn't do that before cancer. I sure hope it goes away. When I go camping I declare the area around my tent a "Snore Free Zone". I really hope that I haven't become one of them. :)

I'm slowing ramping up my physical activity level. I helped assemble Thanksgiving baskets at church on Saturday and today I mounted the winter wheels/tires on Cathy's van. I think the tires gained weight while in storage. I don't remember them being that heavy.

Recovery Day 61 - Life Without The Tube

Most of my abdominal pains have gone away now that the tube is gone. I can now sleep on my left side as well as my stomach. I still find myself trying to move the tube out of the way when I tuck in my shirt. I'll be glad to get rid of that habit. I would like to start doing sit ups but I'll wait another 5 days like the surgeon recommended.

Since the tube came out I haven't been tracking my calorie intake. I suspect that my intake is a bit lower now but so far not down enough to cause a drop in my weight. Eating is still a time consuming chore and my taste buds haven't come back much. I have recently added canned grapefruit to my diet. The taste is muted but I can tell it is a bit sour/tart.

Before I went back to work I was concerned that I had lost some of my skills as well as my ability to concentrate on complicated problems. I am happy to say my fears were unfounded. I can still write complicated code that nobody else understands. I am consulting at a local school district helping them to come up with a data warehouse for their student data. The past two weeks I have been focusing on grades. We have come up with grade data (GPA, cumulative GPA, class rank, etc) that doesn't currently exist in their current system in a format that they can report off of. The data warehouse is going to be impressive.

Recovery Day 57 - No More Tube!

I had my stomach tube removed today! It was a very quick and painless procedure. Before they removed it they took a look with the ultrasound machine and apparently the end of the tube had slipped out of my stomach and into the lower bowel (I think that's what he said). That could explain some of the abdominal pain I've had. Anyhow, I had a big grin on my face as I walked out of the hospital.

I have a thick piece of gauze over the hole where the tube was. It will take a couple days for my stomach to close it off and there could be leakage. I was told to not drink large quantities of water in a short period of time. Perhaps if I drank a lot of water and did some sit ups I could make a fountain.

Over the past few days I have averaged 2,600 calories by mouth. Today I was off that mark because my stomach seems to be adjusting to the absence of the tube and was feeling a bit off.

I have been back to work for a week now and it's going well.

Recovery Day 50 - Good Progress

In general, I'm feeling pretty good. I'm eating at least 2,200 calories per day and pumping only two cans of formula at night. I only have six cans of formula left to use so the tube will be coming out soon. Meals are taking a bit less time and less water to get down and I'm eating a wider variety of food. I continue to walk about 3 miles at the mall on most days. I started back to work last Friday - mornings only for now. I'm pretty pooped and hungry by the time I get home. I drink a bottle of Ensure about half way through the morning.

I'm currently on Diflucan for Thrush. The Nystatin wasn't cutting it. The Diflucan seems to be doing the job.

I have some abdominal pains that I really hope are due to the stomach tube. My mouth is still dry four days after stopping use of the Nystatin. Hopefully that affect will wear off soon.

We had 20" of snow dropped on us last week. The kids had three snow days. Cathy said I was not allowed to shovel snow or use my snow blower. So I did both - but kept my activity to a minimum. The boys ran the snow blower on the driveway while I supervised. I probably would have done more work with the snow blower but it ran out of gasoline. It was good to get outside.

Recovery Day 43 - Hearing Loss

During my visit today with Dr Klancar I mentioned that my hearing was off. I can't hear as well out of my left ear as I can with my right. She said that the hearing loss was likely due to the chemotherapy and that it could be permanent. I really hope not because the difference in hearing levels gives me a bit of a headache. I also have problems with loud sound. It's somewhat disorienting.

On Saturday I was eating some Ramen soup when a piece of noodle decided to take a side trip into my right sinus cavity (it's what your sinuses use to drain into your mouth/throat). I tried everything I could to get it unstuck but so far nothing has worked. Hopefully it will disintegrate and get flushed out of there.

Tomorrow night I'm going to change my nightly formula intake to only three cans. Hopefully a few days later I'll be down to two cans and then maybe none. I can't see much use in pumping only one can of formula at night. In order to reduce my formula intake I'm going to have to increase my daily food intake (by mouth). I'm stuck at about 2,000 calories my mouth and I'll need to add as much as 1,000 calories. I'm not sure how I'm going to do that. Getting 2,000 calories in now is taking a lot of my time during the day already. But I really want to get rid of the stomach tube so I'll figure something out.

I had my teeth cleaned today. There was some buildup on my teeth that I couldn't get rid of with just toothpaste and a brush. They feel much better now.

Recovery Day 39 - Dining Out!

After walking at the mall this morning with my mom I took her out for lunch at Sweet Tomatoes. This was my first time to eat out since about the middle of July. I tried a little bit of salad (I ate it but the dressing was very spicy), some pasta (not enough sauce, hard to eat), beets (which I normally avoid at all costs), a number of soups, macaroni and cheese and finally some soft serve yogurt/ice cream. It took a long time to eat all that. I ate about 3/4 of the mac and cheese before it got too cold to eat. The tomato soup was good. I hadn't tried tomato soup until today and it's good to know I can eat it without it irritating my mouth and throat. That opens up a lot of other possible foods to try.

My mom and I then went shopping for soups and other canned items with the maximum amount of calories. People listening to us must think we're crazy. The conversation would go like this: How about this soup? No, it ONLY has 90 calories per serving. Hey, this one has 210 calories per serving! Better get three then.

My neighbor Louis read my last post about using the Nystatin rinse. He works in a pharmacy so he called the company that makes Nystatin and found out that they recommend waiting 30 minutes before rinsing with water or brushing your teeth. A big thanks to Louis for tracking that down. One of my doctors said I didn't have to wait any time at all. Oops!

I try not to write really long posts but I want to end with some humor. I have a bottle of BMX that is in an identical bottle as my Nystatin. The BMX is a mix of Benadryl, Maalox and Lidocaine. It's designed to numb my mouth and throat should it be painful. Unfortunately I grabbed the wrong bottle when I was intending to rinse with Nystatin. I thoroughly swished it around in my mouth and even gargled with it. The first indication that something was wrong was when I spit it out. I wondered why it was pink instead of yellow. About that time my lips started to go numb. I quickly realized what I had done and tried to rinse my mouth out with water but it was too late. My ENTIRE mouth was numb. My tongue felt like it was two inches thick, the roof of my mouth was numb, my gums were numb, my lips were numb. My mouth was so numb that I was drooling and could hardly speak. I could have had teeth pulled and not felt it. I couldn't swallow pills. After only 40 minutes things returned to normal and I could then take Nystatin from the correct bottle. Needless to say I have clearly marked the bottle of BMX so this doesn't happen again.

Recovery Day 35 - Food!

Yesterday was my first day to eat more than 2,000 calories by mouth. I won't be able to hit that every day but it's nice to know I can hit that mark.

I had a bad experience with broccoli this week. At dinner on Wednesday I ate too large a piece and gagged on it. About 30 seconds later my stomach decided to come up. In part, I guess I'm still relearning how to swallow. But my portion size selection needs a little work too.

I saw Dr Nemecek on Friday. He said that my salivary glands are unlikely to come back to the same level that they were before cancer treatments and that it would likely take 15 months for them to come back as much as they were going to. I really didn't want to hear that. He also spotted Thrush in my mouth so I started a dose of Nystatin. It's a liquid that I have to rinse my mouth with and then spit it out. I do that twice a day. However, I don't know how long after spitting it out that I'm supposed to wait before I can rinse my mouth with water or brush my teeth.

Dr Nemecek also said that my stomach tube couldn't come out without his permission. While I would love to get rid of the tube I recognize that I'm still not getting quite enough calories by mouth. He also explained why I wasn't putting on any weight. (I have been frustrated because I'm stuck at 150.) Apparently my body is going through a lot of healing and the healing is sucking up a lot of the calories that I'm taking in.

Brushing my teeth has become easier. But flossing my teeth is still like playing hide-and-seek with my gag reflex. Flossing my back teeth is challenging because of that. I have to be really quick on the back teeth.