oral cancer, My personal journey

My computer is still down. I made it in to the library today to try and update my blog a little. I have felt so badly since my last round of chemo that I simply didn't have the will or the energy to go in search of a new computer. This last round of chemo will not turn me loose. I feel like crap and have a terrible sore throat also which seems to be getting worse daily. I was told that the nadir would be about 2 to 3 weeks after my last radiation which was on the 24th of Dec.
I am sweating as I type this. My wife says that I look grey and ashen.
I am on vicodin for my throat. I will alternate that with Motrin every 2 hours. I wake up every day expecting to feel better but every day is the same.
All feeding is done through the tube now. I take only water orally. I must continue to swallow or I will lose the capacity to swallow. That is scary, and I will do my best.
Freinds have offered their computers and I may take them up on the deal. I went to Walmart today to look at computers but they have no selection at all, and I ran out of energy so I am heading home now. I will try to get to the library again soon.

oral cancer. My personal journey

My computer crashed Saturday so I am typing this at the library. My throat is very sore. I believe that I have contracted Thrush. The docs have me on medication for it. It should clear in a day or two. I believe that it is contributing to the sore throat.
I have two more treatments to go, and will be done On christmas Eve day.
I am not sleeping very well which doesn't do my situation much good either

Oral cancer. My personal journey

It hasn’t been a good day. I went to bed at 8:30 last night and didn’t get up until 7:30 this morning. I didn’t sleep for long stretches of time, but if it was all added together it probably added up to eight hours. I feel completely exhausted and slept most of the early afternoon today.
I had to get a shot, this morning, to boost my white blood count. I was told that I could feel anything from no pain to excruciating pain in my long bones as they are forced to produce more white blood cells. I certainly didn’t need that! I prayed about it and so far there has been no pain. Thank the lord!
I have really have had trouble getting the calories over the last three days. Food tastes like crap and feeling lousy makes it even harder to get it down. I am supposed to have 2500 calories a day, but I haven’t got that in the last three days. I came close today with 2250. Gag! Gag!
The chemo nurses told me that the skin on my neck looks really good. It is bronzed from the radiation but isn’t peeling.
Four more days and I will have completed my thirty five treatments. Amen!

Oral cancer. My personal journey

Today is the first day after my chemo. I feel awful to say the least. I have drunk a lot of water today and have peed very little. I think that the chemo dehydrates me drastically. I almost didn’t get the chemo yesterday. My white blood cell count was low. The doctor opted to give it to me anyway, but I have to get a shot on Friday that will build my white cells up again. There’s not much else to say. If this is like my last chemo I won’t feel better for the next 3 or 4 days. Only 6 more radiation treatments to go! Yeaaa!

Oral cancer. My personal journey

NEWS FLASH!!!!
Had chemo today.
I feel like crap!
Details at Eleven

Oral cancer. My personal journey

Today's the big day! The day of the double whammy. I get radiation at 9:45 and then five hours of chemo. Goody! I can't wait. The consolation is that this will be the last chemo. I will go through five days of feeling like crap but then it will be over. I checked out a book titled, Short Stories Of The South, at the library yesterday. I started reading a novel at the last chemo session but so much time elapsed between the chemo day and when I started to feel good enough to read that I lost interest in the book and didn't pick it back up. I won't care if I finish the short stories or not.
Yesterday Pat and I celebrated twenty years of marriage by just sitting around and talking. The house is warmly decorated and joyful. It was very pleasent evening.

Oral cancer. My personal journey

Tomorrow I will have my last chemo. UGGHH! I talked to the chemo doctor yesterday and told her that she would be making me sick again in a couple of days. She told me that I should look at it as making me well. I guess that is a more positive way to look at it. Anyway, I am dreading it but at least it will be the last session of chemo.
I have seven more sessions with radiation and then I will be done. I can’t believe that it is almost over.
Pat talked to a lady today that had a similar treatment as I am having. She had throat cancer. She said that it took about six months for her to regain her taste. I hope that I get mine back much quicker.
My throat is sore but the pain is still manageable with 200 MG of Motrin every four hours. That’s good. The pain always seems to get worse in the evening. A fever seems to work the same way. I wonder why that is.
I don’t know how much blogging I will be doing over the next few days. It will all depend on how I feel. I have asked god for the strength to get through this. So far he hasn’t let me down!

Oral cancer. My personal journey

Eight more radiation treatments to go! I feel great today! I got good news from both doctors! Both the radiation doctor, the chemo doctor, and the dietician were delighted regarding how well I am doing. I actually gained two pounds this week. They both said that I am doing well because I do what they ask me to do. I force myself to eat. I use the feeding tube, and I try to get some exercise every day if possible. I told them that all the prayer has made a significant difference also, and having a devoted wife surely means the world as well. The radiation doctor says that he has another patient that is going through the same treatment that I am having and that he is not doing what is required. The doctor said that he is at the opposite extreme. I figure that I must do what the experts tell me to do if I want to have a chance at beating this thing.
I was told that my throat will keep getting worse for a couple of weeks after treatment. I didn’t need to hear that.
Chemo is Wednesday. UGGHHH!!!
So far 400 MG of Motrin is keeping the pain in my throat in check. I have the prescription for Oxycodone here if I need it. The problem with that is that it can contribute to the constipation, and I will have trouble enough with that after my next round of chemo. Oh well. I will do what needs to be done I guess and try to remember that I am closer to the end of this than the beginning. I started treatment very early in November which seems like yesterday. I talked to a man that had the same thing that I have and he has been cancer free for two years. He told me that this will be nothing more than a blip in my radar soon.
I can’t wait for the blip!
Oh boy! Mashed potatoes, green beans, bologna, cream cheese, milk and protein powder in the blender. Yum yum!! Can't wait! Can I have seconds please?

Oral cancer. My personal journey

Today has been a bit of a downer. I felt like I slept good last night, but woke up tired, and have felt down all day. Every day is a surprise.
Paul said in his letter to the Thessalonians this morning that we should be thankful in all circumstances. The priest’s homily was also on this topic. I sat there wondering how I could possibly be thankful for my present circumstances. Maybe it will be revealed to me later. I am certainly thankful for much. I am thankful for all of the wonderful people in my life. So many have offered their help. Many more have offered their prayers. Some have driven me to my treatments. One neighbor has taken care of my yard. My wife has been an absolute saint. I couldn’t have picked a better wife. My estranged daughter and I talk almost every day now, and I am truly thankful for that. So maybe I should be thankful for my circumstances. My eyes have been opened. I see love and concern every where. People truly are good.
A walk on the beach or a stroll through the woods has always brought me peace, and made me aware of how beautiful god’s world is. Today I went for a walk along a secret beach that I have found. There was a piece of someone’s pier washed up during a storm. I sat on this pier for a long time just watching the gulls, listening to the small waves as they washed up on the shore, and feeling the warm sunshine. It was beautiful and very peaceful. I prayed that god would give me the strength to get through the next ten days.
Tomorrow is the beginning of what could be a very rough period. I have nine radiation treatment in ten days with chemo thrown in just for some extra laughs. I should finish everything on the 24th. I have been told that my throat will get very, very sore. It already is sore enough to require Motrin. I have a prescription of Oxycodone here at the house, and my chemo doctor said that she will write me a prescription for liquid morphine if I need it. I am praying that it won’t get that bad. It's in god's hands.

Oral cancer. My personal journey

We went for a ride today. I just need to keep mobile. Normally, during the winter, I would be in my work shop building bird houses, but I can’t take the cold and the fumes from the kerosene heater would probably affect my throat. It’s tough just wasting each day.
I am about to face what I think will be the toughest period of the ordeal. I have chemo next Wednesday which means that I will be down for at least five days after that. I still have to be taken for my radiation treatment during this period. My throat is getting worse also, but the end is in sight. I pray for strength to get through this period. I know that I have said many times that I must live in the day, but sometimes I can’t help but think about where I may be in a few days.
I have been consuming enough calories between what I am eating and the tube feedings. My weight should be good on Monday. I can’t do much more than I am doing to maintain it. I am ahead of the game compared to most patients.
My sister and brother-in-law will arrive on the 23rd and will stay for a few days, and my daughter and her family will be here Christmas day. I hope that I am functional enough to enjoy the visit.

Oral cancer. My personal journey

I am down to nine more radiation treatments. Next week I will have six treatments as the clinic will be open on Sunday to offset the Christmas down time.
I am still doing very well. We went to Richmond yesterday morning so that Pat could attend a memorial for her dad and I could attend my three year old grandson’s Christmas program at his preschool. My energy level is not 100% but I feel good enough to do basically what I want. My ears are still plugged with fluid, my throat is sore but manageable, and my constipation is under control. I had to leave a urine specimen at the chemo lab this morning. I have had some twinges in the right kidney area and they want to see if anything is going on. Food still tastes awful, but we found that some things don’t taste as bad as others. For example; Last night’s dinner was mashed potatoes, green beans, milk, cream cheese, and three slices of bologna all processed on high. It tasted almost pleasant.
I absolutely dread chemo next Wednesday. I try hard not to think about it.
I have been told that my throat will begin to feel better about two weeks after radiation is completed, and that some people start getting their sense of taste back about the same time. I eagerly await that! The nurse told Pat yesterday that I lost my sense of taste earlier than most folks. I hope that isn’t a bad omen.

Oral cancer. My personal journey

I had another good day today. Eleven more treatments to go. It was almost seventy degrees here today. I spent a lot of the time outside and sitting on our screened in porch. We did hang three wreaths on some first floor windows. I didn’t feel strong enough to do much else though.
My throat is tender today and I am starting to get a twinge in my right kidney area occasionally. I hope that I am not going to compound my present situation by passing a kidney stone!
I think that I will feel well enough to go to Richmond after my treatment tomorrow. Pat wants to help her mother decorate her tree and then they want to go to a memorial service for her dad who passed away last August.
I am going to try to get to my three year old grandson’s Christmas program at his church. That will be a hoot!
I got a phone call today from my niece’s husband. He wanted to see how I was doing and to let me know that his kids pray for me everyday and that he and his wife do also. That was very uplifting to say the least.

Oral cancer. My personal journey

I had treatment number 23 today. The numbers are going down but not quickly enough for me. I am going to start counting the remaining treatments instead of those already completed.
I hardly have to shave at all anymore. The beard is mostly gone except for a random whisker or two that seem to be resistant to the radiation. Pat trimmed my hair the other day and almost didn't have to trim the back of my neck.
I feel pretty good today, and went over to my brother-in-law’s house for a visit this afternoon while Pat went Christmas shopping in Newport News.
I certainly don’t have the strength that I would have, but I’m getting by pretty well.
I spent part of the night in my recliner again last night. It was almost 8:00 when I awoke. All in all I’m getting a fair night’s sleep with time divided between the bed and the recliner.
I combat indigestion every day which is undoubtedly brought on by the consumption of the rich foods like ½&½ . I still pack as many calories in as possible in small amounts of food. Today I had a tube feeding at 8:00 followed by scrambled eggs, cheese and ½&½ cooked in olive oil. All processed in the blender. Lunch was a box of Campbell’s tomato soup blended with a ¼ cup of processed mixed nuts ( 240 calories in a ¼ cup) and a can of supplement. This brought the meal in at around 750 calories. So far today I have consumed 2300 calories. I will have a tube feeding later which will bring my total in at around 2700 for the day. We have figured that I need 2500 to maintain my weight. All of this mess was choked down. I tell myself that I have to treat food as medicine. Forget the taste! Just get it down! It isn’t easy.
My throat became a little more tender than normal last night and I took a couple of Motrin which took care of it. I had to do the same today. The pain is still manageable and I could get by without the Motrin if needed.
There are a lot of people praying for me and simply knowing that fact helps me keep my spirit up. I thank all of them.

Oral cancer. My personal journey

Sunday was a really good day! I felt pretty good. I never feel wonderful because of the treatments but I felt good yesterday. We went to church in the morning and then Pat got invited to go to a Christmas carol sing at a local church, and I asked her to please go. I want some sense of normalcy and freedom for her.
Several people called me yesterday to see how I was doing and to share some encouragement with me. I can’t tell you how important that was to me. Some people don’t call and I believe that it is because they aren’t sure what to say. I know that they care. I was that way myself. A call from friends or family removes the sense of isolation that I sometimes feel. It makes me feel like I am still connected, and truly lets Pat and I both know that people care.
Radiation went well this morning. We saw the dietician afterward. I was weighed and had lost 3 pounds. I was hoping to have not lost any weight. We discussed ways to combat the weight loss. I am getting off of the feeding tube and going back to regular eating even though everything still tastes like crap. Pat says that she will handle making sure that my caloric count is high enough. I know that she will!
I saw the doctor also. Both he and the dietician think that I am doing fantastically. I asked them if they really meant that and they replied, “absolutely!” which made me feel really good. I am still not taking anything for my sore throat. My throat hurts but the pain is tolerable.
There are a lot of people praying for me. I KNOW that has made a huge difference!
Breakfast this morning was 355 calories of supplement through the tube and then 2 scrambled eggs, a half cup of ½& ½ , a ¼ cup of cheese, and a handful of mushrooms cooked in olive oil and then processed on the liquefy setting in the blender until the whole mess could be sucked through a straw. UGGHH!
We look at the calorie count on items that I might eat. We went to the grocery store after treatment today to pick up a few things. We bought bologna instead of turkey or ham lunch meat simply because the calorie count was higher in the bologna.
Lunch consisted of home made black bean and chicken soup with ½ &½ , 2 slices of bologna and 2 scoops of protein powder. There was approx 3 cups when blended. It tasted as delightful as breakfast.
The main reason that I am not gaining or at least maintaining my weight is because I am not eating the other things that normally would go with a meal. For example; I would have had toast, bacon, and maybe even some jelly with today's breakfast. and I would have had a roll or 2 with lunch and probably also would have had a couple of cookies afterward.
I had some more good news! Pat and I figured that the last radiation treatment would be on the 29th. We were wrong. I will finish on the 24th. That will be an emotional day.
I continue to concentrate on one day at a time. Once in a while my mind wanders into the future and I call it back immediately. There is nothing out there but needless worry.

Oral cancer. My personal journey

It’s Saturday morning. No rushing around to get to my treatment on time! We stayed in bed until 8:00 which felt great. Pat is putting the finishing touches on the Christmas tree. She told me a little while ago that she is very happy this morning. I am too.
Constipation is still a really BIG problem. I started drinking Metamusil and am taking Ducolax and am trying to add fiber to my diet. This morning’s breakfast consisted of oat meal, cranberries, pineapple, fortified milk and honey all put through the liquefy process in the blender. My breakfast was purple but still tasted awful. At least it looked Christmasy.
I feel good this morning. Not great but good. I am still not taking anything for my throat. It is a little sore but very bearable. The dry mouth bothers me a lot at night. The Saligen is still keeping my saliva glands functioning somewhat, but I can only take one of those every eight hours. I still wake at about 2:00 and can’t get back to sleep without getting in the recliner and sleeping for a couple hours. I then wake up and go back to bed and sleep fairly well. As I said before the dry mouth and throat wakes me every hour or so.
One day at a time. Why worry about tomorrow. None of us even know for sure whether it will come for any of us.

Oral cancer. My personal journey

I had radiation treatment number twenty one today. Pat thought that it was only number twenty. I said, “Believe me! I keep a careful count!” I was right. Amen!
The radiation doctor saw us sitting in the waiting room and came out to share some good news with us. He said that another guy had finished his treatments which were basically the same as mine. He still had a slightly swollen lymph gland so they removed it and found it to be cancer free. Amen again! I need good news!
We counted the days and weekends in December and will finish treatment on the 29th providing the machine has no malfunctions. Merry Christmas!!
So far I am feeling okay. Not wonderful, but okay. The Saligen that I am taking for my saliva glands has kept them functioning at least part time. I still wake up several times at night and have to drink a little water though, and am still spending part of each night sleeping in my recliner so that I can keep my head elevated enough to breath through my nose.
The most intolerable part of this ordeal not counting the chemo is the terrible taste situation. I am eating regularly, and have augmented somewhat with the feeding tube. I have made it a goal to fight the weight loss as much as possible. So far so good.
My poor daughter and grandson arrived about 3:30 yesterday and had to leave about 6:30. My grandson started coughing on the way here and it got worse. We all decided that it was best that they leave and not spend the night. His situation developed into a bad cold with stuffed up nose. I don’t need that at this time when my immune system is down anyway. I have been washing my hands like an obsessive compulsive person since he left. Hopefully the germs won’t linger more than a day or two.
One day at a time.

Oral cancer. My personal journey

A friend drove me to my 20th radiation treatment this morning. I actually feel pretty good today. I realized yesterday evening that I might be suffering from a little nausea, and remembered that I had some nausea medicine for those occasions. I have no idea why I hadn’t thought of that earlier. As I said before; There are so many things to remember. I got a decent night’s sleep last night. My dry mouth woke me several times and I did spend a couple of hours sleeping in my recliner before going back to bed. It might not sound like a good night’s sleep but it was better than I have been getting.
I never got answers to my emails to the hypnotists. I will dig out some phone numbers, from the internet, and give them a call today.
My throat is both sore and dry but still bearable. I am taking nothing stronger than Motrin at this time.
We will do a couple of tube feedings today and gradually work up to seven if needed.
My daughter and grandson are coming this afternoon and will spend the night. He is a very typical 3 year old and we will have a lot of fun this afternoon and tomorrow. He has a good idea of what Santa is all about, and has been helping his mom with the unbreakable decorations.
I am very happy to be feeling much better today!
One day at a time.

Oral cancer. My personal journey

The visiting nurse just left. She showed Pat and I how to use the feeding tube. She spent quite a bit of time going over things and making sure we knew exactly what to do. We will start with four cans of supplement a day. One can at four hour intervals and gradually work up to seven cans. Each can has 350 calories. I will still continue to eat as much as possible.
I felt terrible when I got up this morning. I had expected to start rebounding from the chemo effects. I thought that after feeling better yesterday I would naturally feel better each day. I realized that I had not been drinking enough fluids for several days and started pouring it down today. I talked to the radiation nurse about it this morning as well as the home care nurse this afternoon and they agreed that it was certainly a contributing factor to why I felt so badly. I didn’t have to pee for several hours after I started drinking which was a good indicator. I won’t let that happen again!
There are so many things to remember! I have a list of things to be done and medicines to be taken on the kitchen counter. I have another list of things to do stuck on the bathroom mirror. We check the lists several times each day to see what we have forgotten. There is always one or two items it seems. Our laid back , routine lives have changed dramatically.
The neighbor came over and cut and vacuumed the lawn today. God bless him. He has done this twice. We are very fortunate to have moved from our place on the water when we did. We could have never maintained that place while going through this. There were large oak trees everywhere. Their prodigious leaf production amazed me each fall when I cussed every one as I raked them all up.
One day at a time.

Oral cancer. My personal journey

I finally started feeling a little better late Monday evening. I have found that the chemo knocks me down for five days, and I mean knocks me down! I got more strength back today and had my 18 radiation treatment which puts me just past the half way point. My throat is a little sore tonight but still manageable with Motrin.
I had enough energy today to go for about a quarter mile walk. I could have walked farther but thought better of it after having not done a thing in the five days. I didn’t want to push my luck. I rested for a while and then used the leaf blower on the driveway. 600 MG of Motrin take the rough feelings away which helps. I am certainly not looking forward to my next round of chemo that’s for sure!! I would rather go fifteen minutes with a Grizzly Bear than go five days with chemo.
I got some email addresses for hypnosis therapists today from the internet. I emailed them re: information On whether they thought that hypnosis may be able to at least alleviate this terrible taste for food. Hopefully I will get an answer or two from them tomorrow. I wouldn’t expect everything to taste wonderful. Just make it tolerable.
Nine cases of food supplements were delivered this afternoon. The home nurse will come to the house tomorrow to re-instruct us in the proper use of the feeding tube and we will begin using it immediately to augment my diet. The full color pamphlet that came with the supplement showed several people happily enjoying their tubes. One guy was sitting on his lawn tractor smiling out at me. Another was showing his apparatus to his beaming wife. You would have thought that they were admiring their new BMW. I don’t believe that I would make a good poster child for them. The whole idea of the tube repulses me, A fourteen inch tube protruding from one’s chest is not glamorous? So far I have done everything that I have been told would help me and I will do this also.
Feeling good again really feels good!!!
One day at a time.

Oral cancer. My personal journey

I thought that I would feel better today. I was very wrong. The chemo is still kicking my tail. I felt very discouraged. “What’s the use?” It was all that I could do to make it to my radiation treatment this morning. I had virtually no strength. I have gotten a little strength back as the day goes on though. The doctors and nurses say that I am doing very well. I have maintained my weight for the past two weeks, which is good. I am also not in much pain.
I told the doctors that it was getting harder and harder for me to eat. Food tastes horrid and I am starting to gag. The doctor and dietician think that I should start using the feeding tube although it will still be very important for me to keep using my throat. I was told that the end results are better for people that keep some food going down the normal path. I will do my best.
I will be half way through the radiation tomorrow. I will have 17 more treatments to go.
I am trying to find a hypno-therapist. I want to see if there is a chance that hypnosis could make a difference with the way that food tastes. Maybe hypnosis can at least take the edge off of the bad taste and make food a little more palatable. Maybe I am reaching but anything is worth a shot.
There was an ad for one of those eleven billion calorie mushroom burgers on TV The other day. I have the vision of that burger implanted in my mind. I want that taste!!!! Now Dam it!
One day at a time.