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.

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.

Recovery Day 17

Every day is different. That seems to be true for this recovery period. No day has been just like the prior one. Today is no exception.

My night time sleep continues to improve. I think most of this is due to medications, but I'm not complaining. However, for most of today I have felt fatigued. I've tried to lay down and take a nap but sleep just doesn't happen. My Serotonin levels must still be depleted.

Because of the fatigue I had my mom drive to get my allergy injection. After that she drove me to watch Sean's final football game of the season. Due to treatment and recovery this was the ONLY game I got to watch. They won 38-8 or something like that and I got to see Sean play and get involved in a number of tackles. Woo Hoo!
Though I didn't scream/yell at the game, I did a lot of clapping.

I can tell that parts of my throat are healing. In the past, every time I yawned my throat was very painful. Now, the pain is minimal. It's a small step but I'll take it.

Blessings

Things continue to improve daily though Jim is having trouble seeing this through the fog of his unhappiness. Yesterday he walked at the mall with his Mom and didn't seem to have issues with the car ride. He even drove his beloved truck, "Steve".

Last night he and I went to our first Head & Neck Cancer Support Group meeting. Each person told the story of what type of cancer they had, the type of treatment, how long ago it was, and usually shared something about one or more issues experienced. There were some horrible stories that really made me realize how lucky we are. I also realize how blessed we are that there are so many people that have had head or neck cancer and are so willing to help others. As one guy told me, he's been cancer free for years but he attends all the support group meetings because he just feels the need to give back. Others helped him and now its his turn to help.

Jim came out of the meeting with mixed feelings. Felt good to hear from others that have had this and are doing well now. Was nice to get some valuable tips. But the message that he is doing exceedingly well compared to how others were at 2 weeks after treatment and that he is being impatient and expecting too much from himself did not go over quite so well.

I'm working on a mental list of the things that we have to be thankful for related to Jim's cancer. Some of these items are:
1) his cancer was found right away; he was sent to a specialist immediately after going to his primary care physician (others had years of struggle before getting a correct diagnosis),
2) the cancer had not spread,
3) treatment began immediately (I'll risk getting near politics and say thank heaven for our US medical system and for our health insurance!),
4) Jim did relatively well during his treatment; no major complications nor illnesses
5) Jim's been able to swallow pills the entire time. This astounds others who have been through this treatment and has been a blessing for me too because it meant I did not have to grind pills to be taken through his feeding tube
6) Jim's been able to swallow water through all of this ... if he had not he might have had to go through therapy now to learn to swallow
7) Jim's ability to talk is much better than expected.
8) Jim did not lose weight during treatment. (granted, he lost weight after the biopsy and since treatment ended but there are so many stories of people losing 50+ pounds so we ARE blessed!)
9) I am thankful we are living here in Denver near Jim's Mom; it would have been very tough without her
10) we have such great support from family, friends, church, Boy Scouts, etc. And this situation gave us the opportunity to get to know some of them better

Actually there are many more blessings that could be listed. God is good!

Recovery Day 15

Cathy made three smoothies for me this morning. I already polished off one and I'm working on the second one. So far they seem to be staying down. Praise the Lord!!

The visit with Dr Klancar yesterday didn't result in a whole lot of solutions for my stomach issues other than the thought that my throat/esophagus is misfiring and the more solid foods aren't going down to my stomach but are staying in the esophagus. I may end up taking a barium swallow test next week to rule this out. Dr Klancar did get a first hand observation that my stomach isn't working right. I had been pumping formula in for at least an hour prior to the visit. While she was in the exam room I vomited. I really tried hard to avoid it but I just couldn't hold it back this time.

Much of the stomach problems could be due to my inability to clear the mucus on the back of my throat. It is very difficult to do without triggering my excessively overactive gag reflex.

Dr Klancar did get me started on an anti-depressant drug and recommended more frequent use of the Ativan medication. I should start seeing results in about 4 days.

I slept better last night. I took 6mg of extended release Melatonin and 1 Restoril at bed time. Then at 1 am when I got up to use the toilet I took another Restoril. I can't say I slept solidly but I slept better and more than the last three nights.

I need to review some of the restrictions on the drugs I'm taking, but I'm hoping to to take my Titan out for a spin today. It has been weeks since it has even been started.

Rollercoaster

What a rollercoaster ride we are on! Well, I think it is more of a rollercoaster for the rest of us and something of a subway ride for Jim. The rest of us see improvements in him every day but he wants everything to be back to normal immediately and doesn't seem to appreciate/recognize these.

Yesterday we seemed to take a few steps back. I don't know what the deal is. He was feeling nausea again and since we'd removed the Sancuso patch (used for nausea) he took some Zofran. He felt better almost immediately and shortly thereafter headed to the mall to walk with his mom. Suddenly the issues with riding in a car were back and the ride was hell. (He had not had these issues since the ride to his last radiation treatment. He also had not had Zofran since he took it for about 3 days in August and didn't like it.) He felt horrible the rest of the evening and couldn't bear to use the feeding tube. (This then causes him to stress more about the weight he has lost since treatment ended.) So last night we put a new Sancuso patch on him with the goal of curbing the nausea. Today he's back to feeling pain in his stomach area that is relieved by lying down. Or is it nausea? Or bowel issues? He can't tell the difference which makes it very difficult to figure out how to help him.

He's really down and in his words "can't see the light a the end of the tunnel" despite reassurances from the experts that he WILL get through this. He's also lucky to have Scott (from our church's cancer support group) and Cindy (from the Head & Neck Support Group) as mentors who have been through this themselves and recovered. Having people like this who are willing to share and assist is such a blessing. I myself am considering attending a support group for caregivers or seeking some other sort of assistance; this was easier for me back when he was seeing doctors every day and answers seemed more obvious. The pressure on me to fix things can be quite a load.

I fully expect the doctor to prescribe an anti-depressant for him today. Hopefully she can also provide some answers about what's been going on lately. (e.g. is some of this withdrawl from the pain patch? He did go off of that Saturday. Is the Buspar the cause of his restlessness and inability to sleep? etc.

Thanks for all the prayers - please keep 'em coming!

Recovery Day 12

I had a very difficult night sleeping. One thing Cathy didn't include in her last post was that the loss of Serotonin affects my ability to sleep. Boy, don't I know that. I seem to have all this excess energy at night and sleep just doesn't happen. Sleep supplements are of only limited help.

Cathy experimented with some foods for me. One success was pumpkin pie without the spices and crust. It's juicy enough that I can swallow it OK. Plus, it doesn't taste too bad either. Way to go Cathy!!!

The last pain patch came off this morning. Hopefully the withdrawal effects won't be too bad.

I'm having trouble maintaining my weight. I can't get enough real food in me along with the formula.

It's a really nice day out so I'm going to help Cathy with some painting. But I'm dragging pretty bad due to the lack of sleep.

Struggling with recovery

Yesterday we saw a Clinical Nurse Specialist who has extensive experience with cancer patients. She told us that what Jim is going through is called "Post-treatment Syndrome" and that the weeks following treatment tend to be the lowest point of this journey (we had no idea!) She explained that the human body was not designed to handle 7 weeks of chronic, unrelenting stress. So the levels of serotonin are depleted, leading to depression and inability to control emotions. Unfortunately this period tends to last longer for head & neck cancer patients than for those with other cancers due to the severity of the treatment and the fact that it affects all aspects of the patient's life (e.g. eating, drinking, speech, work, etc.) She contacted Jim's medical oncologist and recommended some medication that will help get Jim through this period. We'll get the prescription when we see the doctor on Monday.

Jim is really struggling. He is extraordinarily frustrated and discouraged. He is bored yet unable to focus on a task for long. And he tends to get very emotional - which is extremely distressful to him.

Speaking for myself and the boys, I'd say that the last 2 weeks have been the hardest since Jim's diagnosis. We want to celebrate that his treatments are over and that things are beginning to get better, yet there he is feeling more miserable than ever and not acting like himself.

We are still limiting visitors to close family and to those who understand or can cope with the what's going on here. However I am certain that Jim will soon welcome visitors and especially persons who will get him out of the house. He's very anxious to become more active and to DO SOMETHING.

Thanks so much for your prayers ... we're constantly pulling from the stash of prayers that have been put aside for us so we appreciate the frequent refills.

Recovery Day 7

One of my pain patches expired last night and I didn't replace it since I'm trying to get down to zero. Unfortunately, a side affect of it expiring is insomnia. I was up almost all night trying to figure out what what was going on. I guess now that we are down at such a low dose the withdrawal affects are more noticeable. There is now just one more patch to go. The plan is to replace it when it expires and that will be the very last patch. Hopefully we can schedule things so the last patch expires in the morning and then I can have insomnia during the day and not at night.

The food I can eat by mouth is very limited. Cathy made some nice soft pancakes a couple nights ago and I could only eat half of one. Each bite had to be about the size of a pea and it took me a long time to chew and swallow it. I had to reheat it twice. I could use a lot of prayers in this area.

I was bored to tears yesterday so my mom took me out walking at the mall. It was awesome to get out. Hopefully I can do some more of that.

The change is weather is very difficult on me. I'm so cold all the time and it doesn't help that the outside low temperatures are in the 40's and the highs haven't been in the 70's. From what I understand the "feeling cold" is common for patients that have been through what I have. Part of it has to be the weight loss.

Recovery Day 5

I met with both the chemo and radiation doctors today and things are looking good. The PICC line was removed (now I have to be extra careful to drink enough fluids!). I've been OK'd to drop the pain med dosage down each time a patch expires (they overlap and expire every 72 hours). Finally, I have been told what the requirements are for getting the feeding tube removed.

To remove the feeding tube I need to eat on my own for two weeks without using the tube and without losing any weight. Sounds easy, right? Wrong! Without my taste buds working and also given that I'm limited in what I can swallow (my throat does still hurt) it is going to be very challenging finding high nutrition foods to take the place of the formula. (drinking the formula does count but the stuff I'm using isn't very tasty)

One doctor said the taste buds could take as long as a year to come back. The other doctor said 2 to 3 weeks at the earliest. That's a big difference. Both doctors agreed that some of the taste buds may never come back.

The family is on drip patrol. Apparently the end of my nose was in the path of some of the radiation. I have no sensation when my nose is dripping. So everyone is reminding me when it's time to find a kleenex.

It's past time for my nap so I'm done for now.

Recovery Day 4

As Cathy stated previously, I'm very impatient to have this recovery over and done with. The 100 micrograms of pain killer is now down to 75. There is great disagreement - and a significant lack of information - on how to proceed. The next patch is due to be replaced this evening. I'm all for changing out the 50 microgram patch that is expiring with a 25, for a total of 50 micrograms. We'll be having an solid conversation with my Doctor on Monday about how we "should" do this. I hope the process involves days and not weeks. I am strictly forbidden from driving until I'm off the pain patches. :(

I tried a variety of foods today: chicken broth, pudding, applesauce, yogurt and canned peaches. My taste buds really haven't come back online yet but the chicken broth isn't too bad. I want to start eating regular foods ASAP so I can ditch the feeding tube or at least not have to rely on it. I'm quite a ways from making this goal.

An outing

Today Jim went with me to put gasoline in the van and to Walmart to pick up some oil. Jim really wanted to get out of the house but in the end, Walmart was too much for him. Too many sights, sounds, people. It's overwhelming for someone who has been hanging out in a quiet bedroom mostly by himself.

He didn't get much sleep last night because of all the hacking and spitting he had to do. So now he's falling asleep mid-conversation. (I had the day off today so I managed to get a small nap. He likes the comfort of having me in the room with him even though I don't do anything to help with the phlegm issues.)

Yesterday I learned NOT to have him looks things up on the internet related to medications. I should have known better but I guess I wasn't thinking. Of course the people with good experiences don't post stories on the internet so what he read caused him even more stress and worry.

Despite the fact that Jim wants to move full-force ahead with recovery and is very upset about not having seen great improvements this week, we're going to be taking this slowly.

Cards from friends & family

Recovery - Day 2

The nausea I'm feeling is significantly reduced. That's great! I suspect it will continue to go away the further I get from the last time chemotherapy was administered. Still, I managed to vomit around Noon. The only explanation I have at this time is that there must have been a large quantity of mucus built up in my throat and when I tried to expectorate it out the contents of my stomach decided to come too. That was very disappointing as I'm not able to push in as much food through the tube as I would like to since we're trying to reduce the amount of Regelan that is used. (Regelan encourages my stomach to move what is in my stomach to the next stage. Otherwise it tends to stay there and I get this nasty feeling of being full because everything is sticking around.)

I'm desperate to get off the tube feeding. I managed to eat a slice of canned peach at about 1pm My stomach didn't quite know what to make of it but it didn't reject it. For "dinner" I had two slices. I was able to taste the peach. Hopefully that means my taste buds are beginning to come back.

My ability to regulate my temperature is still messed up. I wanted to spend time with the rest of the family today but I just couldn't. The temperature difference between my bedroom (regulated temp and humidity) and the kitchen is a good eight to ten degrees. My body doesn't adapt fast enough for that. My throat clenches up and I start to gag with vomit being a possibility.

As Cathy posted earlier I am frustrated at my progress. I know that my progress is normal, but still, I want this whole thing over and done with. I'll do whatever I can to accelerate the recovery process. All the drugs are making me a little wacky and way more emotional than normal.

Cathy continues to be a wonderful caregiver. I don't know what I would do without her.

Frustrated

Jim's EXTREMELY frustrated with his status and is so very anxious to get things back to normal. Realistically it is too early to be looking for improvement; that ought to start in a week or so. This is not what he wants to hear. He's very determined so expect him to be pushing the limits soon.

He's been operating on very little sleep ... something that would mess with any of us. Add that to all the meds and pain killers and it isn't pleasant. He did get more sleep last night so the plan is try the same sleep aid again tonight.

Thanks to all for the prayers (keep 'em coming) and for the good wishes and food and rides, etc. You're great!

Completed 35 radiation treatments!

The last radiation treatment was this morning. Jim was visibly different afterwards; a great load was taken from his shoulders.

We are told to expect improvements to begin after about a week. Jim is very anxious to get off of the pain medication (he doesn't like the way they make him feel nor the strange thoughts they cause him to have). The doctor said he can start the decrease in about a week. He can get rid of the PICC line (for IV fluids) as soon as he can drink enough water by mouth. And he can say good-bye to the feeding tube as soon as he can eat enough solid food. These things will take time.

We are both absolutely pooped after today's appointments. I'm sure that lack of sleep the last few nights has greatly contributed to this. I am hoping that he'll begin to sleep better now that all of the treatments are complete. That is, as long as he doesn't start worrying again about what this next week will bring.

Now I've got to go close my eyes for a few minutes of rest.

Treatment Day 35 - Finally!

The day is finally here and I'm a basket case. Will my stomach hold up for the drive? Will my perfect record of not vomitting on the treatment table hold?

I so want this to be over with. Temerapature control is still a problem. I'm wearing a winter ski hat most of the time. I blend in at the radiation clinic but look like a bank robber anywhere else.

We'll meet with the Chemo folks after the radiation treatment so they can clean/replace the dressing on the PICC line and provide any other bits of recovery advice. We'll probably have to set up future appointments at that time also.

I met with my cancer mentor and his wife yesterday. They provided a lot of encouragement and reassurance. Plus Kelly is a nice guy.

We're baaaack

Jim was released yesterday afternoon. We're now focused on getting through today and the last radiation treatment tomorrow (Monday) morning.

Zzzzz ....

Jim apparently saved his wakefulness for night time. We shut the lights out just after 10pm but he was up again nearly every hour after that. Around 3:30 or so he was bored. (Not me, I wanted to sleep!)

Several important things to mention: Tuesday was the last chemo treatment. Monday is the final radiation treatment. I kinda hope they keep Jim here at the hospital till after that last treatment so he doesn't have to endure the drive here that morning.

Gotta go, he wants to go for a little walk.

Friday night

Sitting here waiting for the nurse to bring Jim's 9pm meds. He woke briefly, found a white-noise generator online, started it running, then waited for the nurse ... but fell back asleep. He's been doing a lot of sleeping today. That is, as much sleep as hospitals let you do. He's becoming quite good at cooperating with the nurses and frequently falling immediately back to sleep as soon as they finish taking his vitals or giving him meds or whatever it is they wake him to do.

They seem to have gotten the nausea under control as there's been no issues with it while I've been here today (since about 11am.) They also put him back on formula via the tube (they originally would not allow any "food" as they wanted to do some tests first, so this is the first food he's had since arriving around 5:30 last night.)

Poor Jeanette (Jim's mom) slept on a really lousy rollaway bed here last night. It had a bar across it at about where a person's chest hits the mattress. The mattress was kind enough to fold itself on either side of the bar so you could get maximum contact with the bar. However I have been blessed with the inheritance of a chair-that-becomes-a-bed complements of an exiting patient.

Jim's up again; guess it is time to chase down those 9pm meds (it's 9:30 now) before he falls asleep again.

BTW, Sean's feeling much better. Jeanette is sleeping at the house tonight. She's awesome.

Feels good to have a few less worries tonight.

In the hospital

Jim's in the hospital tonight. He hasn't been sleeping and has nausea and vomiting issues. There's also incredible anxiety about the remaining treatments and the week immediately following them. This is really tough stuff. I've been told its the most difficult treatment in the radiation oncology office.

Unfortunately Sean and Patrick have been ill this week. Jim's mom took Sean to the doc this afternoon and found that Sean has strep.

I feel INCREDIBLY pulled apart today as I wanted to be with both Jim & Sean. But Jim's mom is staying with him tonight and I know he's in good hands. Sean is very understanding but he's still a kid who is sick and wants his mom. At least this way both Jim and Sean get some mothering. I sure hope that I can let go and get some good sleep so that I'll be of use after this.

Only two treatments left ... then after 1.5-2 weeks he's supposed to start recovering.

Deep breath ...

3-day weekend

Oops ... major slip ... I failed to say that Jim's spirits seemed to be better yesterday than they were on Thursday. And today's not bad either. I think we almost got Jim talked into going outside to sit on the patio this afternoon. Or maybe he was just being agreeable because it was easier than not. I'm a bit worried about him sitting alone indoors in a darkened room all day long. Seems to me it would depress anyone. I've tried to talk him into reading or listening to music or watching a movie but he hasn't been interested. I try talking to him but that doesn't work well for either of us for long. He tried joining us in the main part of the house today but he can't seem to handle all the voices and noises and activity so he went back upstairs soon after.

Our priest Fr. Ken came over to chat with Jim last night and brought him a Mother Theresa meditation. I was thinking of having a number of us read and record it for him to play back. Now if I can just get around to doing that ...

Today Jim helped me to pay bills. This is normally his job and as he has much of it automated it's not as easy as me just writing some checks. His mind was working pretty well for this task but his stomach wasn't exactly cooperating so it took a bit longer than expected. However I was sooooo thankful he could do this.

Now whereas most of us are happy for a 3-day weekend, Jim has mixed feelings. Because Monday is a holiday he doesn't have radiation and so will have to go one day into the following week in order to get in his last 5 full treatments. He would MUCH prefer to get it all over with on the 11th. Yesterday he tried to bribe the doctor into shortening his number of treatments but the doc would have none of it. He said that they know what treatment works and they don't dare do less or the cancer might not be destroyed.

Sorry that you're missing out on gory details of how things are going. If he felt up to it I know Jim would have plenty of gross things to tell you about. But instead you're stuck with me and will have to wait for him to recover some before he starts to share.

Week 6 - OVER! - 5 treatment days remain

I don't feel much like posting but I'm sure people want to know how it is going.

It was a really tough week. Jim has been feeling very discouraged and wondering how he would ever make it through the remainder of the treatments. He says that prior weeks went fairly quickly but this week has been never-ending. He's not doing much of anything anymore, just hanging out in the bedroom in the recliner or the bed, shuffling back and forth to the bathroom, and going to the hospital daily for treatments. He's not interested in the internet, email, nor even Club Titan. Those who know him know that this is NOT like Jim at all. I'm anxious to have him back.

The drive to and from treatment is still extremely difficult but Jim is finding ways to cope with it. Driving him is quite a challenge because one must avoid bumps in the road, start and stop smoothly, etc.

Jim's throat is hurting more and his neck is looking quite burned, the skin broken (and as he says "crispy".) However, on a good note, I believe that he is doing VERY well with swallowing; the doctors are quite pleased that he is sipping so much water. And he still has a bit of voice though he uses it very sparingly. I end up doing a lot of talking for him. (I expect he hopes I don't get too used to that!)

I expect to be spending most all my time taking care of Jim next week (with the help of his mom). I've warned people at work that I will have very little availability but that this is temporary.

The hydration via IV here at home is going well. However the last 2 nights he's had some issues with regulating his temperature; he gets extraordinarily cold even if the room is not cold. I suspect it is related to the IV, if we lessen the flow he improves. (Or maybe it is just that we pile on the blankets.)

Jim is not able to handle loud noises well and also doesn't do well with long periods where he must remain alert (30 minutes is "pushing it".) And since he cannot afford to become ill, we are not having kids in the house (other than our own of course) and not encouraging visitors.

Greeting cards are definitely welcome ... we read them to him and then hang them up so they are visible.

One day at a time ...

Week #6 day 3

It's getting tough mentally. Ever hear of the Footprints poem? Well I'm picturing that single set of footprints in the sand because God's surely carrying Jim right now. I know he's got the strength to get through this but today its been hard for him to see that.

We haven't much time for emails these days but we are reading them. Thanks for your support & prayers.

-Cathy

Week #6 - end of day 2

The decision was made yesterday ... no surgery to replace the feeding tube. Jim is going to tough it out and get through this with the tube as it is. He's been doing well - really diligent about getting his nutrition whether he wants to "eat" or not. (It's tough to force upon him when I know he doesn't want it but we both know its necessary.) We're also trying to be better about taking meds regularly and consistently. He's on at least 7 different meds now. I'm in charge of them and of writing down everything (feeding times & amounts, medicine times & amounts, bowel status, side-effects, deciding when to add other medications, etc.) We're also doing the IV hydration twice a day now. It is extra work but it is also a relief to feel more sure that he's getting the hydration he needs.

It appears that for the remainder of treatment either Jim's mom Jeanette or I will be going with him rather than recruiting drivers (though we still might try out a ride in a Cadillac.) We've reached the point that things are changing quickly and we get new prescriptions, instructions, information, & advice daily. Jim is speaking little so he sometimes needs a translater or someone to ask questions for him and to take notes. Also he gets a bit hazy/confused due to all the meds in his system. I'm trying to keep Jeanette up-to-date on most everything so she can fill in for me as needed. It greatly helps my work situation when I can spend a day here at home.

Yesterday when it was time to leave for the hospital I was scrambling around at the last minute removing seats from the van and making up a "bed" so Jim could lie flat. Something had set him off & he didn't think he could handle the drive, but he managed to do it lying down. However he did sit up for the ride home AND he rode successfully with his mom today. I wouldn't say he was comfortable either time but he seemed to do better than last week.

His chemo "high" wasn't as spectacular last night but it did keep him up much of the night. He was very wakeful and about as talkative as he can get these days.

It is getting very difficult for Jim to swallow but he's valiantly continuing to sip on a water bottle as often as he can. The skin on his neck is burned red, breaking down, and terribly painful. Yesterday we switched from applying a special radiation cream to using sheets of a "foam" that is similar to craft foam sheets with a sticky side. You peel off the backing and apply the foam to the burned area. Of course as the nurse said "this doesn't work very well in the neck area because it won't stay on". Today Jim apparently told the nurse that I'm good with things like that so he brought me the stuff to cut & apply. I did some creative scissoring and am now hoping it will stay on till tomorrow.

I am encouraged that he still occasionally tries out his sense of humor. Like yesterday in the chemo room when he stuck his fingers in his ears and made faces at the nurse & I. Strangely enough, these days this sort of thing is quite comforting to me. :)

Next week they expect Jim's white blood cell count to decrease, so he'll be getting a shot of something to improve that and to get him through the following week.

As usual, we SURE appreciate your prayers!

Ready to begin week 6?

No choice in the matter ... it begins tomorrow. Jim seems to be dreading it and I can't blame him. We're trying hard to do this one day at a time but it's tough. I find it hard because I've got to look at our schedule for the week and try to ensure that everyone's got rides here & there and that if I need to be away Jim's not left alone, etc. It's harder than it sounds as I'm pretty sure my brain is only working at 70% of capacity (at the most) these days. As for Jim, well, it's pretty obvious why he has trouble not worrying about tomorrow.

Jim had the PICC tube placed Friday afternoon. It seemed to go without incident though it took 2-3 times longer than they told me it would. Then Saturday a nurse came to our house and taught us how to give Jim IV fluids through that line. (I'm so glad that Jim's mom came to learn too) It seemed like a ton of stuff to remember but I did it today and didn't seem to cause Jim any harm so it looks like we're now in the business of doing 3+ hours of IV fluids here each day. It should be easier on Jim since it means less time away from home. Those long days are REALLY hard.

Oh, and late on Friday we saw the surgeon to talk about the possibility of replacing the feeding tube with a new one placed in a different spot/method. The surgeon says that the anesthesia folks will want to know if they can put a tube down his throat - so that is something to ask the doctors tomorrow. On the other hand, I really don't think this surgery is going to happen. The bottom line is that Jim is not anxious to go through another surgery on top of his already weakened state, especially with no guarantees that things will be any better. I stand by whatever decision he chooses; we'll get through it either way.

It was a nice surprise Saturday to find that the nurse who came to our home is also the nurse that has taken care of Jim through almost all of his chemo treatments. Brenda is a lovely person and she works SO HARD! Those ladies in that chemo room are really special people. I thank God that he created people so different than myself; I couldn't do their jobs. If the emotions didn't kill me the medical/icky stuff would! (I obviously did NOT get my Mom's nurse genes.)

My brain is shutting down already which doesn't bode well for Jim as I still need to take care of his nighttime routine. I hate to wake him up for that but it gotta be done.

Treatment - Day 24

I was feeling relatively good this morning until I took Zofran (anti-nausea drug) on an empty stomach. The drug info provided with the prescription says it can be taken with or without food. I took it a few minutes prior to leaving for the hospital. By the time I got to the hospital I wasn't sure if I was going to vomit or not. I'm really looking forward to a time when I don't have to take all these drugs.

After getting fluids and the radiation treatment I set up an appointment on Friday to get a PICC installed so that I won't have to put in an IV each day. That was challenging as the hour long procedure requires the use of Ultrasound. We had to move the radiation appointment around to fit it in.

Also on Friday will be the consultation appointment with the surgeon to discuss moving/replacing the stomach feeding tube. The new tube would be installed in a completely different manner than the first one but I don't have the time or energy to get into that.

I had my mom drive my truck tonight when we got home to see if it rides any better than her Chevy Equinox. It didn't, but it was close. The rough ride to/from the hospital is tough on my stomach issues. I wish I owned a Cadillac that had a smooth ride.

Week #5 - Cathy speaks

Here we sit in the chemo room. We are here each day this week to receive fluids via IV (in addition to Jim's regular daily radiation treatments) because there was worry that he wasn't getting enough hydration. It seems that I may be in charge of doing this at home next week. (Thank heaven no needles involved, they'd just leave an IV in. Otherwise I'm afraid he'd be better off on his own as I'd be passed out on the floor!)

I feel better knowing that he's getting these fluids and I do think it is helping him - but there's still other issues. The stomach tube is still causing what seems to be significant pain when he is upright (sitting or standing). We are going to see a surgeon as soon as it can be scheduled - to look into the possibility of having the tube replaced. This time they would do it laproscopically so that the doctor could see Jim's insides and place the tube in a more ideal spot. It would include an overnight stay at the hospital as it will be a true surgery (vs the outpatient form he did last time.) Jim is very reluctant to go through another surgery; he looks back on the recovery time from when the current tube was placed and he does not want to go through that again. His doctor is very concerned about him attempting to continue as is for another 7 weeks or so. There's enough pain from the radiation that he doesn't need to also deal with a stomach tube issue on top of that. At this point the tube issue is worse than the radiation pain (which is supposed to be significant.)

Due to tube pain he spends most of his day lying down. We moved a recliner into the bedroom so he can switch between that and the bed as he wishes. He's also hanging out in the bedroom because the humidifier is there and because it is more quiet than the rest of the house. Life's going on around him and I'm afraid it gets noisy despite our efforts to be quiet.

How does he look? About the same except with what looks like a sunburn on his neck. His skin there is becoming quite uncomfortable so he puts special cream on it. He shaved on Sunday but I am pretty sure that's the last he'll shave his neck area for some time.

Monday evening he had the usual chemo "high" from the happy cocktail they pump into him. It's nice to see him so active. Sean commented that Dad is pretty funny on Monday nights after chemo. This Monday night it was 11pm and I was nodding off. But Jim felt it was a great time to discuss all kinds of things. I tried to stay awake but I did a lousy job of hiding my efforts. In the end I went to bed and he stayed up.

Unfortunately today he's much different. He's had stomach issues (either pain or nausea or both?) since waking this morning. He's been moving & reacting very slowly and had a heck of a time getting out of the recliner in chemo to come down here to radiation. (Yes, we have moved since I started writing.) They gave him anti-nausea meds and doubled-up on the anti-anxiety drug (which also happens to be an anti-nausea drug) and we gave him additional pain meds but he's still feeling lousy. I think it worsened when he started the formula feeding about an hour ago so we shut that off, which worries me because it means he's had hardly any nutrition yet today and it is 2:30pm.

I know this experience is nothing for me compared to what it is for him. I will say, however, that it is very emotional and tiring for the caregiver. It's tough not knowing what to do to help him and knowing that even if I do all I can it won't be enough to make him comfortable nor can I do anything to take this from him. The boys are trying too; they've even had several fights about things like who would get to help Jim or they yell at each other for being too loud.

Radiation ought to be finished soon, so I'd best get this posted. I'm sure Jim will comment and/or correct me as he wishes. Actually I hope he DOES because that means he's feeling well enough to do so.

Treatment End of Week #4 - Stupid Medical Equipment Tricks

My weight "gain" in my last post didn't take into account the constipation factor. I'm not gaining weight. Instead, I'm down about 10 pounds overall.

I'm still trying to figure out what is setting me on edge. It might be a couple of the meds that are doing it (one for nausea, one for other stomach issues). In the mean time, the radiation nurses are cranking up the music volume for me.

Laying on my back continues to work well to relieve the pain from my liver pressing on the feeding tube.

The hair on my neck where the radiation is being applied is starting to fall out. The skin is also starting to be painful like a bad sunburn.

I have started to have Tinnitus in both ears.

I have a device that is a vacuum pump used to suction thickened saliva out of my mouth. It kind of looks like a small air compressor but it has a can to catch all the crud. It's very similar to the tool used by dentists to clear your mouth. I used it last week to clear my mouth and that worked pretty well. But I still had a buildup of crud a little ways down my throat. I put the end of the wand as far back on my tongue as I could stand and then closed my lips. Bad move. The suction device turns out to work pretty well as a stomach pump. I managed to start the pumping of the contents of my stomach and then my stomach did the rest of the job. Yuck.

The other stupid thing I did was to re-use a bag for my formula. They gave me a 30 day supply and I'm not sure how tough it will be to get more so I rinsed one out and filled it up with more formula. Within four minutes of starting the pump I was at the sink vomiting up whatever had been in my stomach. I don't re-use bags any more.

Treatment - Day 17

I didn't sleep much last night. I think the steroids in the chemo kept me wired all night long. After radiation I slept most of the day.

The louder music helps to drown out the noises the radiation machine makes. But I'm still on edge. It might be one of the medications that I started last week. I'm going to skip it tomorrow to see if it makes a difference.

I think my weight came up a bit. That's something new.

Treatment - Day 16: No Ulcer

Cathy and I just got back from a long day at the hospital. Radiation was at 9:45 and Chemo was scheduled for 10:30. The chemo room was really busy today. They were missing a few staff, supplies were short and there were lots of patients. Fortunately, my nurse had lots of patience. :)

I finished chemo at about 3pm and then went over to radiology so they could take another look at my feeding tube and try to resolve why my stomach still hurts.

First, they shot some contrast (Iodine) into my stomach through the feeding tube so they could use a device like a Sonogram to see what was going on. They didn't use any of the goop on my skin like they do with a fetal Sonogram. So I may not have the correct name of the machine. That was inconclusive so they called up the CT folks to see if the CT machine was open.

So the second thing Radiology did was to walk me over to the CT machine and take a quick couple of runs through it. That took all of 2 minutes.

While the Radiologist can see my liver and the tube close together on the CT scan their machine can't do a scan while I stand up. The Radiologist's theory is that the edge of my liver is sitting on the feeding tube. When I stand or sit upright my liver is putting pressure on the stomach end of the tube and my stomach isn't sure what to make of it so it sends out stomach-like pain signals.

One option to resolve it is to remove the tube and place it in a different position. The tube would be unavailable for at least 24 hours and there is no gaurantee that I wouldn't run into issues with the new location. Given that getting 99% of my nutrition now relies on the tube this isn't a workable option.

I simply need to spend most of my time laying down. Given the amount of fatigue I get from the chemo laying down isn't a problem. Traveling in the car has been a bit of an issue though. But I'm working on the ghetto look by leaning the seat as far back as possible. I just need to wear my baseball hat off center and get some bling and I'll have the look down.

On a positive note I didn't come home with any new prescriptions!

Treatment End of Week #3

Sheesh, I sleep through most of Thursday and Friday and Cathy takes over the blog. Seriously, I did sleep through most of those days and I'm glad for the help. On to the updates...

I think I have an ulcer. The anti-nausea drugs don't help my stomach issues at all. But if I lay down on my back my stomach issues magically go away. Stand up and they're back. According to the chemo staff I shouldn't have chemo related nausea 48 to 72 hours after the chemo treatment. So I don't think this problem is completely due to the chemo. Something else is going on. We'll be discussing this with the chemo staff tomorrow. In the meantime I'm spending a lot of time in bed. Good thing I have a comfortable bed!

Friday was a difficult day on the radiation table. My stomach was feeling pretty lousy and every sound the machine made seemed to set me on edge. The background music was not one of my choice (I eleected to listen to what was already playing) and the volume was not up very high. On Monday I plan to play some rock-and-roll at high volume.

I finished the last dose of medication for Thrush on Friday. My tongue is still white but it doesn't hurt like it did before I started the med.

I started using a patch for pain medication on Friday. The Tylenol wasn't cutting it and it was getting difficult to take the pills. Consequently, I'm not allowed to drive.

Contrary to what a certain 16 year old that I might be related to thinks about these cancer treatments I do NOT glow in the dark and I won't be turning into one of the Fantastic Four.

Basic info about the situation

I heard that we need to provide some basic information for those not already in the know. Some of this was published earlier but other bits might not have been mentioned.

• This cancer is considered to be VERY TREATABLE. After treatment most folks will never see a recurrence
• The PET scan revealed that the cancer is only in the area of Jim's tonsil. It had not spread to the lymph nodes.
• The treatment does not involve surgery. (He had 2 surgeries but they were the biopsy and to place the feeding tube.)
• The treatment consists of 7 weeks of radiation and chemotherapy. Radiation 5 days/week, chemo once a week.
• The radiation does most of the work. Chemo is just there to make it more efficient.
• Jim is not expected to lose his hair though it will probably thin some. (I suspect he's a bit disappointed in this one; he wouldn't mind being bald. And I'm sure he'd love for me to knit him some special hats.)
• The treatment is brutal. The nurse in the radiation department told me the other day that this is one of their most painful programs.
• After treatment is over Jim will still have a number of months of recovery.
  

And ... Jim can expect within a year he'll be back to doing all his usual activities.

Happy Friday!

A note from the nurse (aka "wife")

Similar to last week, Jim was obviously "up" after chemo on Monday. And again it lasted about 24 hours. For the most part the boys and I are happy then; it's much easier to see him that way and can also be somewhat entertaining. On the other hand, when it wears off, the contrast is remarkable and spirits are down. It seems that's where we've been since mid-day Tuesday.

It is obvious that the pain has geared up. Jim has almost completely stopped taking nourishment by mouth due to pain in throat and gums and the possiblity of stomach upset. He has been trying to stay away from the heavier pain killers for similar reasons and because he wanted to be able to work. However he is beginning to withdraw so today I vowed that we are going to start getting serious about managing the pain. (I hope I don't have to live up to what Patrick said to me in anger today, "you are a NASTY woman!" ... LOL)

I’m proud of the boys, for the most part they are doing well with the unknowns, chaos, stress, fear and worries in this household. We’re all emotional and its coming out in different ways. Sean is showing more stress and unhappiness with school than expected. Patrick is his usual self but cranked up a few notches. I have these weird emotional times when a mere kind word or the question "how is he doing?" causes my eyes to well up with tears.

I saw a quote today that gives me a bit of comfort: "Present pains can lead to permanent gains."

Treatment Week #3

Summary
I can't talk much now. My tongue and throat hurt too much. My ability to talk clearly is pretty close to zero -it requires a lot of effort to enunciate. I do mumble quite well.

I'm pumping formula now day and night. Having to get up and hit the bathroom dragging the feed bag and pump requires me to wake up a little more than I want. So I'm losing a bit of sleep. But the added consumption of nutrition needs to be done.


By my scale at home I'm down 8 pounds. The folks at the chemo and radiation offices think I'm only down 3 pounds. Little do they know I'm carrying around 5 pounds of rocks in my pockets.

Radiation treatments switch to 9:45 AM on Tuesday. Hopefully I can get more face time in at a client site if the treatment goes well and my stomach agrees to go along. I can't plan more than about 2 hours ahead these days. Matt Karp is one of our recent Eagle Scouts from the troop. He will be giving me a ride to radiation treatments Tuesday and Wednesday. Matt heads off to college in just a few days.

Tuesday night is also the 10th year anniversary for Sean's Boy Scout Troop. We're planning to attend that.

Details
Monday is chemo and radiation day. Even though I got the double whammy it was pretty smooth. I received a prescription for the first step in higher level pain killer: Morphine. The Tylenol isn't cutting it any more. The Hydrocodone may have caused me to vomit last Wednesday and it also seems to negatively affect my ability to sleep. So I'm a little leery of it. This Morphine must be pretty powerful stuff. The instructions say to take 1/2 ml. For comparison, the Hydrocodone is 15 ml. I haven't take the Morphine yet.


I also have an anti-fungal prescription for a possible case of Thrush. My tongue feels about 2" thick and it's still white but not nearly as bad. Thrush is common with chemo patients. Maybe should quit kissing all the toadstools/mushrooms (fungus) in the back yard.

Today I learned that one the drugs in the chemotherapy cocktail mix is a diuretic. That might explain why on chemo nights I'm hitting the bathroom about 8 times. Ugh.

On Sunday (yesterday) I was pumping the new formula Nutrin 2.0 instead of the IsoSource 1.5. About 3/4 of the way through two cans my stomach started to hurt at 2pm. Thinking the new formula might be the cause I stopped the pump. After 30 minutes my stomach still hurt. I tried a Famatodine (acid reducer) again and that didn't seem to have much effect. I missed 6 PM church because A) I wasn't sure if my stomach hurt due to chemo induced nausea, B) my stomach hurt from the new formula or C) it was gas/constipation.


What seemed to work was to eat constantly. I had a small cup of yogurt and felt fine. Then 10 minutes later my stomach was back to hurting. So I downed another yogurt. Same results. It was getting late and eating constantly wasn't going to work with solid food. So I hooked up the feedbag, filled it with two cans of IsoSource 1.5 and started pumping. Case closed. No real issues today.


I will need to try the Nutrin 2.0 again as I have two cases of the expensive stuff and it requires fewer cans per day than the IsoSource 1.5.

I can still eat some soft foods. I tried mashed potatoes and beef gravy tonight from KFC. I ate it but it burned my tongue and roof of my mouth - too spicy. Still I got a bowl of it down. I'm currently working on half of a small Watermelon as I read this.

Chicken soup is still working for me. Temperature matters. Cold, room temperature or hot and I can't eat. Warm is good. But as long as it takes me to eat it I need reheat even a coffee cup amount of it. I tried an Apple Fritter from Lamars last week and thought it was pretty good. So I bought a second one for breakfast the next day. That didn't work out at all. I could stand to take two nibbles and that was it. Maybe the texture of a fresh fritter matters.

Simple, Vanilla Bean Ice Cream works. But I need to hide it from the kids. They'll go through that faster than President Obama goes through deficit spending money. Cream of Wheat is feed I need to get back to eating.

Cathy, Sean and I made it to the Scottish Festival on Saturday. There were some interesting things going on. I Saw some swords that I suspect are only useful in SciFi/Fantasy novels and highly choreographed battles.

I was walking pretty slow and used my trekking poles for support. The Festival really didn't seem the same as I couldn't enjoy the Fish and Chips and couldn't take part in the Scotch tasting booth like I did last year. Beer was out of the question also. The four block walk home was tough. I was pooped. Cathy and Sean went back later for the concert. I stayed home and performed my nightly dental/throat health procedures:

1. Flush the sinuses - this doesn't hurt and does a lot of good clearing things up
2. Floss the teeth - this hurts
3. WaterPik the teeth - this has worked well over the past few weeks. But the jet of water might be too much. I think I'm blowing out chunks of my gums. I'll try a lower setting.
4. Brush the teeth - this hurts my gums like crazy even through I'm using Biotene toothpaste
5. Mouthwash - this is the Biotene stuff that says it doesn't burn. It does but not nearly as bad as your normal mouthwash like Listerine.
6. Fluoride the teeth - this involved squirting a special bottle of fluoride (comes from the dentist) into the dental tray and then installing the trays on my teeth for at least 1 minute. I think the fluoride irritates the existing sores on my tongue and gums. On the bright side it seems to really put my salivary gland into producing overtime. Tough trade off.
7. Wear a mouth guard at night. I'm grinding my teeth together and that is causing headaches and perhaps issues with my tongue. An antiseptic throat spray helps a bit with the tongue sores. The mouth guard is different from the dental trays which are too flimsy to provide any protection. It's the same mouth guard I used in TaeKwonDo sparing.

Treatment - Day 10: Can YOU eat while showering?

My stomach seems to have settled down enough that I pumped two 8oz cans of Iso-Source 1.5. However, the pump rate was rather anemic at only 75 ml/hr so it took about 7 hours. That's a long time. I pushed the pump rate up to 100 ml/hr at the end. I know, I'm really living on the edge.

The EntraLite pump is a little bigger than an index card and runs on rechargeable batteries. The sound it makes isn't too bad as long as it isn't sitting right next to you. It gets a little cranky if you turn it on but don't start the pump.

Since the pump is rechargeable I can take it and the bag that feeds formula into the pump anywhere. The feeding process was so long today that I took the pump with me when I showered (my weekly one). I hung the pump and bag on the outside of the shower and that worked pretty well. I just had to be a little more careful to not hit the longer feeding tube. I guess that means I can sing and eat at the same time.

Not that I can sing at this point. I'm talking a lot less today. My throat is hurting more, but along with that my gums are starting to hurt also. The radiation nurses said it was due to the radiation. Fortunately, the pain is - so far - only on the inside of the top left gum. My tongue is also doing some strange things. It feels a little numb and it has a white, pasty color. I asked Dr Davis about it today and he said it didn't look like Thrush. Cathy thinks it is and some pictures I found on the Internet seem to agree. I'll check back with the doctor on Monday during chemotherapy.

In news of the really bizarre, I was bit by an insect while in the radiologists waiting room. It was not a spider. At least I don't think it was. The bite swelled up a bit and left a red spot behind. I caught the insect and put in in a zip lock bag. After my radiation treatment I was visited by a Patient Advocate and a head nurse. Apparently getting bit in an office at the hospital is a big deal.

Thank you

I see that Jim granted me access to post so I thought I'd test my newfound powers.
We are very grateful to everyone (friends, family, coworkers, Knights, Scouts, strangers, etc) for all of the well wishes, yummy food, transportation, offers of all kinds of assistance, and especially for the prayers. As with the persistent widow in the Bible, at the very least the sheer volume of the prayers is likely to work in our favor!

Treatment - Day 8: Better living through chemistry

This afternoon was very long. I'm supposed to meet with Dr Davis on Wednesdays. But my radiation treatment takes place at the same time Dr Davis is meeting with the tumor board. So I had to wait about an hour for him.

To help with the nausea Dr Davis prescribed Zofran 8mg and Prevacid 30mg. Those two may have helped a bit as I was able to eat some hot & sour soup and some Hunan beef when I got home. The beef was very difficult to eat but I at all the vegetables. I think my sense of taste is rejecting beef. Just thinking about it now makes me want to go "Bleh!".

After eating I slept for about 4 hours. While I was sleeping Karen Mansfield brought over dinner for the family. The shrimp fettucini alfredo smelled pretty good but I was still full so I just nibbled on the salad which was tasty.

I pulled the feeding pump out of the box, charged up its batteries and read the instructions. By then it was too late to get a feeding started. Hopefully I'll have time tomorrow. Dr Davis was very concerned that I wasn't already using formula and impressed upon me that it was getting down to the wire. It won't be long before I cannot eat anything by mouth.

Treatment Week #2

Yesterday was a chemo and radiation day. It went better than last week because we know what to expect now. My throat is progressively hurting more each day. I'm still using two Tylenol, twice a day for the pain. My taste buds seem to be about 70% gone and my ability to produce saliva has been reduced by 40%. I can still eat most foods by mouth but a lot of things taste like Crisco shortening - the regular version, not the butter flavor. Bleh!

I found out yesterday why I felt so good following the chemo treatment last week. One of the first things they put in me by IV was a steroid. I'm being juiced!! It provides a noticable pick-me-up for about 24 hours.

I'm still struggling with consuming the formula through the feeding tube. Even 120 ml of the Nutrin 2.0 caused me to feel like I had pumped in an entire can of Great Stuff expanding foam. Last night I tried a 50/50 mix of formula and water using only 30 ml of formula. That didn't seem to work too badly but it wasn't a lot of formula either. Tim - my nutritionist - is going to get some samples of other formulas that might be easier on my stomach. I may have to try pumping in chicken broth if this doesn't work but I doubt I'm going to get the number of calories I need from it. I'll also try Ensure. That didn't seem to go down too bad the last time I drank it by mouth.

Treatment - Day 4

The past two days have been difficult. My guts were all backed up - most likely due to chemotherapy on Monday - and I didn't feel well enough to eat. Consequently, I lost a few pounds. Yesterday I took two Senocote laxative pills that were supposed to produce a bowel movement in 6 to 12 hours. No luck after 20+ hours. Feeling somewhat hungry after the radiation treatment today I stopped for takeout Hot & Sour soup (large) from a local Chinese restaurant. That seemed to have done the trick. Whew! Who knew I could get tasty nutrition and a BM in one package.

Thinking that the worst was over I later tried out the nutrition formula Iso-Source 1.5 through the feeding tube. I first pushed about 20 ml of water through the tube and then 60 ml of formula followed by another 20 ml of water. 30 minutes later my guts/stomach were back to feeling sour and that lasted long enough that I went back to bed and then didn't feel like eating any dinner. I later ate a very small amount of bread and some whole milk with Glutasolve mixed in it. The Glutasolve is supposed to help with GI issues. I can use all the help I can get with GI issues.

On Tuesday afternoon I went over to see Father Ken at Pax Christi Catholic church for Annointing of the Sick.

Wednesday evening Julia McCusker from Troop 628 brought a multi-course feast consisting of Beef Stroganoff (on of my very favorite meals!!) and a number of side dishes and other meals. I tasted a bit of it that night but unfortunately just enough to get a taste which was quite pleasurable. I hope the boys leave enough leftovers that I can get a respectable meal out of it. It sure tasked good.

I think that we'll get the jump on the laxatives BEFORE the next chemotherapy sessions. In the clinic there a bunch of little old ladies and men. The look pretty calm sitting in their recliners hooked up to their chemo bags. Probably because the know the good stuff to use for laxatives and when to take them. I'll have to pump them for tips when I'm back in there Monday.

Today, Cathy put together a spreadsheet to keep track of all the medicines and fluids that I'm supposed to take each day. Together on one sheet all the tasks are daunting. But it's good to have a place to track progress (or my lack of it).

I picked up 4 cases of formula that will be enough for only 12 days if only formula can be used. The $100 price tag was steep and I'm still not sure that the formula I tried out is going to work. After Friday the price tag jumps to over $140.

My salivary glands seem to be producing less salivation each day. I'm using Biotene toothpaste but I'm going to have to step up performing frequent mouth rinsing.

Treatment - Day 1

Today was the first day of chemotherapy and radiation treatment. Chemo went a lot easier than I expected. The visit started with a bag of saline and a visit with Dr. Klancar. She was quite helpful in answering questions and making an appointment with radiology to check on my PEG-tube. It took a good 90 minutes to go through an entire bag of Cisplatin. The treatment room was a little cool for me and the room temperature fluid going into my vien didn't help. So I had a blanket on my legs, the Prayer Shawl (from Pax Christi) on my shoulders and two rewarmable bags on my arm.

The chemo treatment was rushed so I could make my radiation treatment appointment. The radiation nurses there took charge and secured me to the table quickly. The procedure went smoothly and I didn't have any issues. The .5 mg of Ativan might have helped but I didn't really notice much affect. I'm not very claustrophobic so that wasn't bad. Holding still for 30 minutes wasn't too bad except for my elbows started to hurt due to resting on unpadded metal. I had some involuntary twitches that seemed to affect my entire body. Breathing through my mouth is difficult due to the mask and dentral trays. Hopefully my nose and sinuses stay clear.

After radiation I went to Radiology to get the PEG-tube checked on. It has been very painful the last couple of days. I cannot stand up straight or walk much due to not being able to take a normal breath without pain. They ran an imaging machine and then an ultra sound and said that the placement of the tube looked good and that it was likely that I had a significant internal bruise. Their recommendation was to take more pain meds. Bleh.

After the radiation I was feeling a bit "up". Like someone had slipped a shot of espresso into my chemotherapy bag. That feeling has gone away now. My throat hurts a bit and I'm kind of tired; more than I would normally be at 9 pm.

Radiation treatments will take place at 12:30 pm the rest of this week. My mom has rides lined up for me this week.

PEG-tube Procedure Completed

The PEG-Tube procedure was completed today. Cathy was with me at the hospital from 8am to 4pm.

I thought the procedure was to be done under general anesthesia but instead they used a local anesthesia along with some other drugs and I was awake for the entire thing. I don't remember the actual tube being placed (one of the drugs makes you forget) but I definitely recall the "wire" being threaded through my nostril, into my throat and then to my stomach. That was weird.
This link explains the procedure in more detail: http://en.wikipedia.org/wiki/Percutaneous_endoscopic_gastrostomy

The recovery period took a little longer than expected as I came close to passing out on my first walk down the hall. The lack of food since midnight and the pain meds did a double whammy on me.

My chest/stomach feels like I have a really bad bruise. I don't think I'll be doing any sit ups tonight. Driving is also out of the question due to the Percocet pain medicine.

During recovery we met with the nutritionist. The formula that needs to be used will not be covered by insurance. That is going to get expensive.

I've Been Tatooed!

I picked up the dental trays today. These are basically mouthguards but really thin. Dr Scavuzzo made two sets. One set for at home for flouride treatments and the other set for during radiation treatments. The home set has more room in them for the flouride. Dr Scavuzzo and I spoke at length about the affect the radiation treatments are going to have on my teeth. The lack of action from the salivary glands is going to cause havok on my teeth and I'll have to be drinking a lot of water and rinsing my mouth out frequently to make up for the lack of salivation.

I was also fitted for the radiation mask today. The purpose of the mask is to hold my head in the same position for each treatment and to help the nurse position the radiation machine. The fitting process was a little like being waterboarded. The mask is made of plastic and is heated prior to placing it on my face. It was very hot and felt like a sheet of plastic was placed over my face. My reaction was that I couldn't breath! But the mask is a mesh so there was plenty of openings to breath through. Unfortunately, the first mask didn't mold to my face right so a second one had to be made. The second time was easier. With the mask on I cannot open my eyes and have to breath through my nose. I hope I don't catch a cold as that could make using the mask rather difficult.

As the mask was drying the nurse put a dot tatoo on my chest. I think they use that and the mask to position me on the table.

After the mask was complete they injected me with an iodine solution and ran me through the CT scanner. I've had the iodine before so I knew to expect the nasty tasted in my mouth and the feeling like you've peed your pants. But this time my stomach reacted badly. While I was going through the CT scanner I felt like I was going to hurl. That would have been rather incovenient at that time since I still had the mask on and would have been vomiting through the mesh. The 16 ounces of Gatorode I had downed before the appointment could have had something to do with my stomach's reaction. If I have to do that again - they said I shouldn't have to - I'll be sure to drink only water.

The (outpatient) hospital visit to install the feeding tube is scheduled for next Thursday.

My neighbor Karl sent over a chicken that he smoked today. It was great! Very tasty. Sean had thirds.

Two steps forward, once step back

I made it to the dentist this morning to get impressions made for trays. The trays will be used (daily?) to soak my teeth in flouride and then also used during the daily radiation treatments to help prevent my fillings from causing burns on my lips and tongue. Dr Frank Scavuzzo DDS is a great guy. Having a family dentist that actually knows and cares about you has been very helpful.

Cathy and I went to the hospital this afternoon for the simulation and mask fitting. However, when we mentioned about the dental visit earlier in the day the nurse apologized and said they could not perform the similuation and fitting without the dental trays. Nonetheless, we had a good visit the the nurse from Dr Davis' office and she was able to answer a number of our questions. So the trip to the hospital wasn't a waste of time.

We called Dr Scavuzzo's office to see when the trays would be finished and then we rescheduled the simulation and mask fitting for Thursday afternoon.

PET Scan Results

Dr Nemechek (ENT Oncologist) called this evening with good news from the PET Scan! There is no evidence that the cancer is in the lymph nodes. In fact, he said it was the best PET Scan of any patient of his in the last four years that has tonsilar cancer. The radiation therapy will essentially destroy both my tonsils even though the cancer appears in only the right side tonsil.

I worked a full day today at a client site. By the end of the day I was feeling pretty beat. My lymph glands on the right side of my neck are feeling tender. Dr Nemechek said it's likely due to the biopsy work he did. I hope so since the tenderness is a new thing within the past two days.

Feeling better than the prior night I managed to get in an hour on the treadmill but at a 30% decline in my normal output. I would like to do more but I don't want to push my luck and it seems I need to keep as much weight on as I can instead of working it off.

PET Scan

The PET Scan was interesting. Parts of it weren't as difficult as I expected. The injection of the radioactive sugar had no side effects. However, the technician sticking the IV into me must have been from the "B" team as she was fishing around in my arm trying to find a vein. I finally told it wasn't going to happen and she used a vein on the back of my hand instead. The Barium "milkshake" was challenging to choke down. I tried to see if this lady sitting next to me in the waiting room wanted a swig. She turned me down. I probably could have gotten away with not drinking it all as nobody checked how much was still in the cup.

The IV solution was to mix in my system for 40 minutes while I was resting. By my reckoning it was not more than 35 minutes of a wait.

Going through the PET Scan/CT machine was pretty easy. I just closed my eyes an relaxed. However, after 15 minutes I found out that my elbows where not on the padded part of the table and they were starting to hurt. At 20 minutes the pain was bad. By 25 minutes I couldn't feel my elbows. Forunately the test was over.

Results would be forthcoming on Monday.

PET Scan Tomorrow

The PET Scan is tomorrow. I’ll meet with a dietician some time next week to discuss when the feeding tube is to be installed (required) and what type of food is to be used. I’m 5’10” and weigh 160 Lbs. I’m in great shape. I ran a mountain 5K race while at Scout Camp at 7000’ elevation in 22:58 (good for me as I don’t run but once a year) and I normally climb at least one 14K mountain each summer. I’m lean as can be and going into Chemotherapy and Radiation that’s a very bad thing. I’ve been told to eat as many good foods as possible and try to bulk up. It’s not easy when your throat hurts to talk and even more when eating. I’m working on coming up with a better list of soft foods and protein “bulk up” additives.

Radiologist First Visit

The Radiologist says I need to meet with my Dentist to make sure my teeth are OK and to get me fitted for some sort of device to use during the radiation treatments. Something to do with preventing backscatter from my fillings. I need to get more info on this. That appointment is next Tuesday.

The radiation is going to be such that by the end of week two I won't be able to talk much nor will I be able to eat any food in the normal method. A feeding tube will be necessary. I also need to get fitted for a mask that will be used during radiation. The mask has dual purposes. First of all it holds my head in place during the radiation so that I don't move and end up radiating my brain. That's good as I need all the brain cells I have. Secondly, the mask is used to line up the radiation "gun" at certain points to ensure they are hitting all the right spots.

Full chemotherapy and radiation is expected to start in 10 to 15 days. Each weekday morning will take about an hour for radiation and one day a week they'll add chemotherapy to that. That schedule will last for six to seven weeks. By week three they said I won’t want to eat anything by mouth because my throat will hurt so bad and my taste buds and salivary glands will be toast. Hence the feeding tube. I’ve told my wife I’m going to chase her around the bedroom with the feeding tube :) – just the thought of it grosses her out. I’m even going to have to get special toothpaste, mouthwash and gum to use.

Biopsy Results - Finally!

We were expecting the doctor to call with results on Monday or Tuesday. No results but lots of people calling to find out what the status was. Cathy fielded a lot of those calls for me since talking was difficult. Wednesday morning, July 8th (my birthday), while I was still in bed (I was amazingly sleeping about 12 hours a night) Dr Nemechek calls with the bad news. The tumor was definitely cancerous. He then directed me to call the Hematology Oncologist (deals out the chemotherapy) and the Radiation Oncologist (shoots the radiation into your body that kills cells). I got in right away with the Hematologist that day but the Radiologist is a week off. When finished with the Hematologist she pulled some strings and got me into the Radiologist the next day – I’m still getting lucky!