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.

Recovery Day 30 - Adding To My Diet

On Monday I managed to again go all day without pumping formula. Timing when I eat and having the time to eat are problematic. I didn't have time to eat before I walked at the mall so I was very "hungry". About the only thing at the mall that I could eat was a Dairy Queen malt. I had a medium and according to their nutrition guide that was about 800 calories!

Hungry is in quotes above because I generally have no desire for food but I can tell that my stomach is empty and needs something. When I open the refrigerator I look at all the food and nothing jumps out at me as something I have any inclination to eat. Consequently it is challenging to come up with something to eat. My fallback is to ask Cathy what I should eat. Pretty lame, eh?

The big change to my diet was at dinner last night. Cathy had made some French Toast concoction in the blender a couple days ago. I tried eating it last night and gave up in frustration after eating half of it. Even with syrup it was hard to eat. I was pretty disgusted with myself. The rest of the family had beef brisket (from my good neighbor Ken) for dinner and there was one piece left on the table so I figured what the heck I’ll try it. I pounded it down, and then had two more pieces. It was incredible to eat meat again! It took me 30 minutes to eat those three pieces but I was overjoyed at being able to eat it.

I was at Dr Klancar's office yesterday and she said I was pretty much on track. But I want to be on the FAST track!

I did get my sprinkler fixed and blown out yesterday between a doctor visit and walking at the mall. There were a number of folks that offered to help and I should have taken them up on it. I hadn't realized how much my strength decreased over the past few months of treatment and recovery. I was pretty pooped when it was done.

Recovery Day 28 - No Formula All Day

I managed to eat enough food by mouth to keep me going all day. My total calorie intake was 1,485. That's pretty good but not enough to maintain my weight. So I'll be pumping 4 cans of formula tonight. This is the first day that I haven't pumped formula during the day!

I had Cathy's Souped Up Cream of Wheat, two glasses of 2% milk with Carnation Instant Breakfast drink, one bowl of Butternut Squash soup and half a bowl of Broccoli Cheese soup.

I hit the mall this afternoon with my mom and walked three laps. The mall is pretty crowded so we were dodging people the whole time.

Tonight I returned to ushering duty at church after a two month absence.

Recovery Day 27 - Mixed News

I was up early today to catch a 7:20 ride to the Knights of Columbus meeting from Chris K. It was great seeing the guys I've hung out with at church and KofC events. I'm planning to go to the KofC Spaghetti Dinner tonight to help out a little bit here and there. Chris K has come over to my house twice over the past two weeks just to talk with with. That has been great therapy for me.

I have been pumping at 105 ml/hr today. That is my new record rate. However, to put that in perspective, at that rate it takes 9.5 hours to consume 1,000 ml of formula (4 cans = 1,500 calories). That's a long time. I may have to try drinking the formula to get it down faster. It doesn't taste very good - even with the limited taste buds I have.

Karen M. gave me a lift to Colorado Pharmacy up on Colfax Friday. I picked up 4 more cases of formula. I really need to start eating more and pumping less as 4 cases of formula at 7 cans a day will only last about 14 days. I've been trying to maintain 7 cans a day AND eat food by mouth so I can put on weight. I need to eat more meals (I'm only doing breakfast and dinner so far) and add snacks too if I'm going to reduce the formula intake.

The bad news is that my stomach tube seems to be causing problems again. If I sit in a chair then my stomach starts to hurt. A standing or reclined position isn't a problem. Having a "full" stomach seems to reduce the problem. But I don't have a full stomach often. Maybe if I drink a lot more water and other fluids that would help. Not being able to sit is going to be a serious impediment to going back to work - even part time.

I'm getting better at bringing up the mucus from my throat. I have learned to do it on an empty stomach though. I tried it once right after a large bowl of Cathy's Super Cream of Wheat and came very close to vomiting it all up. With an empty stomach (during pumping formula counts at empty oddly enough) my stomach makes like it's going to come up but doesn't come anywhere close as when I have a full stomach.

In other news, it got down into the teens last night. Consequently, my sprinkler system is all frozen up. I can already tell that there is some damage that needs to be fixed. Ugh!

Recovery Day 24 - Weight Gain!

Something to celebrate! My weight is back up to about 150 lbs! I was really disheartened when it dipped below 145. So my weight coming back up to a more reasonable 150 lbs is really good news. I have been pumping 7 cans of formula a day (3 daily, 4 at night) at 90 to 95 ml/h to work my weight back up. I have also started eating an actual breakfast and dinner.

Breakfast consists of a souped up large bowl of Cream of Wheat. Cathy makes this ahead of time and stores portion size containers in the fridge. She used evaporated milk, butter and brown sugar to rev up the content.

Dinner has been Salmon Quiche with gravy - another Cathy concoction. I can't taste much of it but it smells good so that will have to do. The quiche is fairly soft but I still need gravy to get it down. Eating it requires a lot more focus on swallowing than does the Cream of Wheat. It also requires a lot of time to eat due to the small bites I'm taking. Most everyone else at the table is finished and I'm still working on just my quiche.

The only formula I have been pumping is Iso-Source 1.5 (375 calories/can). I tried pumping two cans of Nutren 2.0 (500 calories) yesterday and I ended up with a stomach that was so sore that I stopped pumping and dumped out all the Nutren. Something in Nutren just doesn't agree with my stomach. Unfortunately, I have two cases of very expensive Nutren - that I won't use - and I just opened my last cast of Iso-Source. So I think I'm going to have to order more Iso-Source. I don't see me eating 2,000 calories by mouth yet. I would really like to get rid of the stomach tube but that's a couple weeks away I think.

I went to Sean's Boy Scout meeting last night. It had been quite a while since I had been to one. It was great to see the adult leaders as well as the scouts. I really missed interacting with many of the adult leaders.

Ready for calls or visitors

In case you were so inclined, Jim is ready for phone calls or visitors.

Progressing each day

We saw the radiation oncologist yesterday. He was very pleased with Jim's progress and tried to give Jim some realistic expectations for his recovery. He said something to the effect that it took 8 weeks to beat him up, its going to take at least 8 weeks to recover. Jim's expectations at just 3 weeks after treatment are not realistic. (Jim's been looking for someone to tell him exactly when to expect certain milestones, but no one can do that since every person and every treatment is unique.)

Jim and I continue to be amazed by the amount of time that the doctors and nurses spend with us. It is as though there is nowhere else they need to be at the time they are with you. This explains why the appointments seldom start on time, so when I start to complain about the amount of time spent at the doctor's office, I need to remind myself of this.

The doctor did not feel that a "barium-swallow test" is necessary; he thinks that Jim merely needs practice swallowing. He encouraged Jim to eat tiny amounts all day long with the goal of getting rid of the feeding tube. Due to recent weight loss, for the past week Jim had really slowed down on trying food and focused more on getting as much nutrition as possible via the tube. I'm pleased to say that he is once again focused on trying to take nourishment by mouth. He's also not by nature an adventurous eater so I appreciate the fact that he has been so good about trying the various concoctions I have been experimenting with.

The doctor also encouraged Jim to avoid sitting around with nothing to do but think. He needs to start small and will take plenty of rests, but this should help him to feel more normal as he has never been much of a couch potato.

Recovery Day 18

Today was a pretty good day. I made it to the mall to walk and even cruised through Walmart without freaking out. I then went to the library to get a few books to read. My mom has been a very generous shuttle service. (I'm not 100% comfortable with driving yet)

I have been ratcheting up the rate used to pump formula into my stomach and I'm up to 85 ml/hr without any discomfort. I think the change to the lower calorie formula is really making a positive difference.

I managed to clear my throat mucus a few times without losing my stomach.

I do need to work on drinking more water. I'm probably drinking less than half of what they want me drinking. But I've never been much of a water drinker so getting into the habit is tough. I don't like drinking out of bottles. I prefer a cup.

I still can't take a nap to save my life.