I hope that light I see at the end of the tunnel isn’t a train . . . .

28 March 2010

Terry has started driving me to the hospital for my daily treatments. She says I’m taking too many pain killers to drive. (I respectively disagree) (but she still drives).

The new radiation treatment has resulted in a sore throat more down towards my chest and what seems to be a serious sun burn around my neck. We did raise my pain meds, but stayed with Percocet. I now take 8 pills a day (2 every 6 hours). I’m never totally pain free. I’ve gotten real good at crushing pills.

Tuesday was a full day. I missed an appointment with my chemo Doctor on Monday morning. I called and apologized and they set me up with a walk-in appointment on Tuesday, because I was going to be there for my regular chemo treatment. I showed up at my regular 7:30am and the doctor was waiting for me. We had a very good discussion about my case, how treatment was going, how I was feeling, the usual stuff.
Dr. Richard has taken a real interest in my case and asks a lot of questions. We talked about our decision to have the PEG (feeding tube) installed prior to treatment and we both agreed it was one of the best decisions ever made. I can’t even think how uncomfortable I would be if I didn’t have the PEG. I’m sure I would have been admitted to the hospital for lack of nutrition and hydration by now. He keeps telling me I’m doing better than expected, due to my age and physical condition. I’m probably 20 – 30 years younger than most of his patients.

He sent me on my way and I checked in with the staff at the chemo clinic, they drew labs and set me up for the days treatment. About half way through the treatment Dr, Richard came in with a copy of my lab results and was concerned that my potassium level was low. Potassium is both an electrolyte and a mineral. It helps keep the water (the amount of fluid inside and outside the body's cells) and electrolyte balance of the body. Potassium is also important in how nerves and muscles work. Potassium levels can be affected by how the kidneys are working, the blood pH, the amount of potassium you eat, the hormone levels in your body, severe vomiting, and taking certain medicines. (WebMD) So, he prescribed a dose of potassium and a prescription for me to take home and administer during the coming week. Just my luck the dose of potassium he prescribed was going to take 4 hours via IV. We finished up my regular chemo treatment and I trundled off to the dungeon for a radiation treatment. Once that was finished, it was back up to chemo to be hooked up to the potassium bag.

Earlier in the day the plan was for Terry to drop me off at the hospital and for my niece to pick me up at approx 1:30pm and take me home. Well this low potassium thing threw a wrench in the works for that schedule. I called Lissa, my niece, and told her I was going to be late and that I would contact Terry and we would work out a solution to picking me up later in the day. It all worked out ok, Terry had a late meeting and didn’t finish up until after 4 o’clock. She came and picked me up on her way home from work. Needless to say, none of this would have been an issue if they had let me drive.

On Wednesday Terry drove me to my radiation appointment. She had never seen what goes on during a treatment. I brought along my camera to document the event. The below pictures are of me and the treatment mask that attaches me to the treatment table my dislike of the tongue depressor thingy, (you can also see some of the radiation burn) and me lying on the treatment table., None of the pictures are very good, but they give you an idea what the treatment is like. That large disk above my head in the last picture rotates around my head stopping at specific points and dispenses a timed dose of radiation. It takes about five minutes per treatment.

On Wednesday I also met with Dr. Atkins after my radiation treatment and we discussed raising my pain medication. We decided to keep me on the 8 pills a day, because I only had 3 treatments left. If I could manage on that level of pain relief for another week or so, my pain relief requirement should start to drop the farther I got a way from my last treatment. I run out of pills on Monday the 29th, we’ll discuss it again.

He turned me over to his nurses to get my vital signs and weight and to dispense some more moisturizer. Being as Terry was with me, they ganged up on me and decided I wasn’t putting enough moisturizer on and they would show me how it’s done. The nurse took out a new glove and a new tube of super duper moisturizer and proceeded to slather me up real good. By the time she was done, from my chin down to my collar bone and completely around my neck, it looked like I was covered in mayonnaise or lard (you choose). They both agreed that was the way it should be done. I was not impressed. I have agreed to slather up real good in the future. I won’t leave the house looking like that, but when I’m at home and just prior to going to bed I do slather up.

They also decided I wasn’t taking in enough nutrition. I needed to up the amount of protein supplements (boost, ensure, protein drinks etc.) or I was going to loose too much weight. The nurse gave me a case of boost plus. I now drink at least 3 of those a day and an 8 oz portion of the vegetable/sports drink stuff. It smells like Hawaiian Punch and V8 juice combined. Argh! I also eat some kind of breakfast and usually a bowl of soup for dinner.

That was Wednesday, I was starting to feel pretty good. Treatments were almost over; pain seemed to be under control. I had enough moisturizer to last any one man a life time or two. Maybe I was going to get through this ok.

Thursday – maybe not so much. I woke up with a serious sore throat, thick stringy mucous flowing like that nasty beast from Aliens, and a very tender neck. It got better as the day went on and Friday was somewhat better. Fridays always call for celebration, end of the week, two day break, only 2 more treatments to go.

Sunday, Terry has been nursing a sore shoulder all weekend. She has somehow aggravated an old injury and she trundled herself off to the emergency room at the break of dawn. She woke me up and through both of our pain, we managed to agree she needed to go to the emergency room. Some hours later, she woke me up again and explained her situation. Old injury, lots of pain, lots of pain killers, take it easy on the couch all day. What a pair we make.

I won’t discuss food this week, needless to say meal time sucks. I will get better, eating will become a pleasure. SOOOOON !!!!!!

Next weeks report will be better.

Just another week . . .

St. Patrick’s Day was my last day at work until I decide to go back. I figured I wasn’t keeping up on my mouth and throat maintenance as well as I could and I’ve pretty much given up on solid food. This makes eating at work a bit messy. I’ll also rely on my PEG for almost all of my hydration now. So, rather then put my co-workers through all the mess and probably gross happenings at my desk or in the rest room, I figured it was better to take it home.

I’ve got a lap top from work, so I will be able to keep up with my email. That doesn’t mean I’ll get much work done, but I will get the 20 admin notes a day that clutter up everyone’s in box.

Chemo treatment went well on Tuesday and on Wednesday we changed up my radiation treatment to reach down lower below my neck proper. I didn’t notice until this weekend that they are also radiating the back of my neck. I’ll have to ask them about that on Monday. We also changed my radiation appointment time from 9 o’clock to 1 o’clock in the afternoon. The traffic is much better at noon than at 8 o’clock in the morning. I get to sleep in and leisurely take care of business in the morning. The routine seems to get longer every day.

We discussed raising my pain meds in the near future. Dr. Akins mentioned putting me on a patch. That’s something new for him, so I’ll be a guinea pig for him. I have to crush 325 mg Percocet and use the PEG to keep up with what I need now. It will be nice to have a steady amount of pain killer, versus taking a dose every 4 hours.

Except for Cream of Wheat breakfast cereal and Oatmeal, both of which I add a liberal amount of warm milk to make it about as liquid as possible, I am on a liquid diet. If it has to be chewed, it isn’t going in my mouth.

Last week’s mass emailing resulted in some great comments and personal emails from y’all. They came at a great time and I will reply individually rather than an open comment to the blog page. I figure if y’all are taking the time to read this and make a comment, the least I can do is acknowledge your time and effort.

I tried to convince Terry on St. Patrick’s Day to take a picture of me with one of my Guinness tukes along with a full syringe of Guinness ready for input to my PEG. Needless to say she wasn’t very encouraging and shut down the conversation quickly. She doesn’t realize this just gives me more reason to stick around until next March 17th and have another one of the many silly St. Patrick’s Day pictures taken. Wives just don’t know to what extent they can provide encouragement to their husbands.

Oh yeah, it was down in the low 30’s (F) this morning. We spent a few minutes late yesterday afternoon bringing in plants to the garage and covering what we couldn’t bring in. Plant nurseries will do a bang up job again next weekend. We never learn.

Major disappointment for me next week. If I wasn’t undergoing treatment I would be attending the 64th NEDBAG meeting at the Edelweiss Lodge and Resort in Garmisch Germany. I believe that would have been my 41st NEDBAG meeting. It also happens to be the last meeting for my other US delegates, CAPT (sel) Stu Baker, USN, who will be moving on to a new assignment in April and MSgt John Winegardner, USAF, who will be retiring in June. I will miss them both and regret not being able to give them a good send off. Both gentlemen are dedicated hard workers that will not be replaced easily.

I hadn’t minded the diagnosis, treatment decision and finally the actual treatment timeframe until now. Up to this point it has been taking place during our winter/holiday doldrums, but next week starts our annual schedule of meetings that run until November. I hope I’m back in the saddle again soon.

In a word YES!!!!!!

Every thing was pretty much normal until Thursday morning, I woke up with a splitting headache (bordering on a migraine) and my throat was sore and clogged with thick saliva. My intention was to get up gargle and take a sinus Tylenol. By the time I had cleared my throat it felt like it was on fire and I was able to spit out some blood. I went to the kitchen to get the Tylenol, but figured I needed to take a few sips of water to lube up the throat and prepare for the pills. I couldn’t swallow the water.

The day before I saw my radiation doctor and he did his usual weekly status check-up. I told him my mouth and throat was getting a little worse than the week before. He asked me on a range of 1 – 10 what was my pain level, I told him when I’m medicated about a 3 – 4. As long as I don’t have anything in my mouth or swallow much it doesn’t seem to bother me too much. He looked at my mouth and throat and said, he thought I was being modest in my evaluation of the pain. He told me not to take any more Tylenol than I had been taking and to start taking Percocet if I needed it. If the pain got any worse he could prescribe something stronger. I told him I’d let him know when I was ready for an upgrade. He also prescribed something called Tri-mix (lidocain, Maalox, Benadryl). I’m supposed to swish it around my mouth and gargle with it 20 minutes prior to eating. It coats the mouth/throat and deadens everything.

Back to Thursday morning. Seeing as I couldn’t even swallow water, I decided to try the tri-mix. It did the trick. But it tastes terrible (wild cherry cough syrup flavor – ugh !!!) and it initially burns the tender sore spots in the mouth/throat until the lidocain takes effect. I was able to down a couple sinus Tylenol and headed back to bed. I was due at my radiation treatment at 9:00am, so I decided to let the medication take effect and just go straight to the appointment instead of going into work for 2 hours. I got out of bed at 6:45 and went through my usual daily routine. I felt about 90% better, but was glad I decided to stay in bed rather then going to work.

The treatment went well and I visited with the nurses, they said my blood pressure was a bit high on Wednesday and wanted to check me a couple of days in a row. It was a bit high, but not in the “we need to do something about it range.” They also gave me some more moisturizer. They gave me the standard version, a super version and a super duper version. The super version is the standard version with lard added. Ok, maybe not lard, but whatever they added it’s thick and greasier then the standard version. My jaw and chin now need the super version. The super duper version has lidocain in it for when my skin gets very tender. (oh boy) Standing buck-ass naked in front of the mirror (yea, a sight I’m not even proud of) it looks like I’ve got a farmer sun tan. My face and neck are red and somewhat tanned down. The rest is lily pale white, except for my face, I almost look British.

Let’s talk food. (a little lemon on that paper cut?) I made some soup this week. I figured I’d puree it figuring that would make it easier to swallow. It worked, trouble is I have no idea what it tasted like. Terry said it was good. I guess she wasn’t lying because she didn’t spit it out and actually had a second helping. It’s to the point where I can’t eat anything lumpy at all. Some slimy vegetables go down ok, but they have to be cooked down pretty well. Anything that has to be chewed is out. You have no idea how depressing meal time has become. There is a section in our Sunday paper called “Taste,” it’s all about food, nutrition, recipes, and restaurants in the local area. I’ve started cutting out articles about restaurants I want to visit when this is all over. I’m afraid how thick that stack of articles will be by the time I get around to start visiting them.

I went to the gym twice this week (Monday and Thursday). Tuesdays are out due to the double treatment that day and it seems I’ve always got something else to do on Wednesday. By Friday I’m so happy the week is over and I’m getting a 2 day break I fart it off and just don’t go. I do feel it helps. I do feel a little tired some days, but I don’t feel weak. I don’t do a heavy weight training workout, just something I call a maintenance workout and I spend 45 minutes doing some sort of aerobics. It keeps my energy level up and connected to the old routine. I’ve lost about 15 lbs since December, that’s 15 lbs I can afford to lose. From here on out I need to watch my calorie intake and keep it up so I don’t loose much more.

I had intentions of staying in bed late Saturday morning, but my throat finally got to the point where I just couldn’t stay there without some medication. The pain wasn’t as bad as Thursday, but I knew the routine and hit the tri-mix before anything else. By the time I was medicated I was wide awake and it didn’t make sense to go back to bed, so I gathered up the Friday and Saturday morning papers and a cup of luke-warm coffee and veg’d at the kitchen table for a few hours. While I’ve cut down to about 3 – 4 cups of coffee a day, I’m surprised I can still drink it. I can actually somewhat taste it and the warm liquid sooths the throat somewhat, it also seems to cut the thick saliva to some extent. I mean a guy can only take so much, no sensation of taste, no chewing a thick juicy steak, no beer !!!!! At least I still have coffee. You know of course next week I’ll tell you it probably makes me throw up.

Sunday pretty much sucked (must have been that daylight savings time thingy). I got up around 7:00am tried to rinse out my mouth and throat and take some medication. I managed that, made a pot of coffee and went back to bed. Back up around 9:00am, made another attempt at rinsing out my mouth and settled in with the Sunday paper. Terry made me a bowl of malt-o-meal and I managed to get that down along with ½ cup of coffee. I finally got cleaned up and poured a pint of water into my PEG, I can’t drink more than a couple of sips of water at a time now, so I’m going to have to rely on the PEG for my mass hydration intake.

We visited a nursery this afternoon, the temperature has reached the low 80’s this week so all the flowers, grass, vegetables and whatever are ready to be planted (and then wiped out in a late spring freeze). By the time we got home I was beat. I managed some lunch and then slunk off for a 2hr nap. Terry planted flowers.

With 3 weeks of treatments left and 3 – 4 weeks of residual treatment effects after that, I can’t imagine what I’m going to have to deal with. I’m thinking the feeding tube was a good idea. I used it Friday to put in about a liter of water, I wasn’t able to drink as vigorously as I’ve been able to over the last few weeks. It’s important I keep hydrated and if that’s the only way, I have no problem using it.

I’m taking it a day at a time now making a decision on when my last work day will be. I’m talking as little as possible; I spend a lot of time caring to my mouth and throat. I can’t see subjecting my co-workers to my gargling and spitting, I’d spend more time in the men’s room than at my desk. So I’m thinking sometime this week I will pack it in and give up the day job. I can bring my work laptop home and keep in contact with it, maybe get a little work done. The idea of sitting around the house just doesn’t sit well with me. Sure, I’ve got the daily medical appointments to take care of, but that’s only a few hours a day. I guess it’s time to refocus from work to healing. It won’t be easy.

Ok, enough wimpering for one week. I’m not sure what new woes I’ll have for you next week, maybe the frogs will make an appearance.

Can it get any worse?

I’m getting a bit tired of the routine and I’m looking forward to the end of treatments. I’ve received what I believe is the final schedule for both my chemo and radiation treatments and the last one is 30 March. I can’t wait.

No real change to this weeks events, Tuesday went a bit smoother. I decided to just go to the chemo treatment clinic at 7:00am and get in line for my blood to be drawn. I was the second one there, but it still took almost 45 minutes. Then it was down to the basement for my radiation treatment. No x-rays, I guess they were busy. Back up to chemo. I got plugged in and didn’t have to wait for the lab work to come back. Nurse Sandy came around to evaluate me and see how the treatment was going. I told her about the rash and acne, it’s subsided a bit on my face but still pretty prevalent on my chest and upper back. She gave me some ointment and a prescription for an antibiotic. I’ve used the ointment and it seems to be taking care of the acne. I haven’t used the antibiotic; I’d like to limit the number of drugs floating around in my system if possible. I also mentioned I was starting to get a bit nauseated in the mornings, so she gave me a prescription for that as well.


On Wednesday they took x-rays during my regular radiation treatment. I saw my radiation doctor and listed my side effects I was starting to experience. He took the blame for anything happening in my mouth and throat, but said I’d have to talk to the chemo folks about anything else. He said the dry mouth was going to get worse and my throat will start giving me trouble soon.

The rest of the week things started getting worse. My tongue now hurts all over and I have a couple of new sore spots in my mouth. Eating is getting to be uncomfortable and I’m starting to shy away from things that need a lot of chewing or that are dry. You know, pretty much everything. Fruit is off the list, too acidic. It won’t be long and the only thing going in my mouth will be liquid and mush. This is distressing because I really like to eat. I’ve been the cook in the house for about 35 years and during my travels I’m the Tony Bourdane type and will try just about anything once. Not being able to taste and eat my favorites is going to be torture.

This brings me to last weeks comment about asking my wife out to dinner, bad idea. At least I didn’t take her out to a Ruth’s Chris Steakhouse or something as equally expensive. We just went to one of the local TexMex places. I ordered chipotle enchiladas and a beer. I like spicy food and the enchiladas just tasted bland and a bit sour/bitter. Mouth feel is pretty strange now as well. For those of you that know me you know I’m somewhat of a beer aficionado. I like bold big flavored brews. Ordering a beer was a mistake, for one I couldn’t taste it period, and number two the carbonation and alcohol went straight to the sore tender spots in my mouth and throat and made it quite uncomfortable to drink. I of course being a cheap son of a bitch drank it anyway. I should have known better, but I haven’t had a drink since the 7th of Feb and a beer would really have been nice. I’m not sure what is going to be worse, not being able to enjoy the things I’ve been used to eating and drinking all my life or the pain I’m going to have to endure over the next several months.

Ok, that’s the mouth/throat issues, now on to the others. The rash/acne thing on my face is under control, but it spread to the chest and back, that’s a bit uncomfortable. I’ve now got some kind of dry cracking spots on the corners of my mouth which isn’t too bad until I open my mouth to put something into it. I’m beginning to get cracks around some of my fingernails and thumbs, this isn’t too much of an issue yet. The nausea got worse this week and I started taking PROCHLORPPERAZINE in the morning. The nausea doesn’t seem to bother me when I’m sitting around home or at work, but when I start moving around or I’m in the car, it shows up and causes some queasiness. I was given a prescription for PROCHLORPPERAZINE a antipsychotic, a group of psychoactive drugs commonly but not exclusively used to treat psychosis, which is typified by schizophrenia and the manic and mixed states associated with bipolar disorder, as well as many other conditions like nausea. I’m thinking they know more about me then they are letting on.

I enumerate these issues not to illicit sympathy, but to document for other throat/tongue cancer patients the side effects of the treatment. I got the idea for this blog from Mike Shafer who is a 3 ½ year throat cancer survivor. I learned a lot from his blog and recommended web sites. My side effects are tracking along pretty much like his and this can be educational for others and provide reassurance that we’re not alone in our trials and tribulations. Mike also has a line somewhere in his blog where he is enumerating his side effects that goes something like, “the side effects keep mounting and getting worse, I expect to walk out to get the paper one morning and my roof will be covered with frogs and my yard infested with locust.” This cracked me up and reminded me to keep a positive attitude, the effects will subside and life will get back to some version of normality in due time. And of course there’s also that quote, “What doesn't kill you makes you stronger.” With that in mind, I expect to be a superman when this is all over.