May 30, 2011 - Coca Cola to the Rescue

May 30, 2011 – Coca Cola to the Rescue??

I usually don’t post two days in a row because there usually isn’t enough change to warrant it – until today.  I’ve consumed a lot of soda in my life (maybe that’s why I have cancer; who knows) but today I had the best 20 ounce bottle of Coke of my entire life! That’s saying something. Let me explain.

As noted in yesterday’s posting I’ve been absolutely miserable the past several days with more nausea, two visits to the vomitorium, and an inability to get enough calories into me to keep my weight stable. This morning after another rough night and miserable start to the day, I asked my wife to go buy me a regular Coca Cola. I remembered something in my past about how coke syrup is supposed to be good for nausea. I started pouring it down my feeding tube not knowing what to expect. Well….my energy level shot up and my nausea subsided within 20 minutes. Not completely of course but much better than I felt before. I guess the caffeine and sugar made a difference. I was then able to “eat” more IsoSludge. Later today I took more anti-nausea meds and more pain meds and became fatigued so off to bed I went. I woke up feeling lethargic again with a slight increase in nausea. More Coke.  And, again, it did wonders. I’ll be telling my ChemoDoc about this on Tuesday when I go in for my lab tests.

I wish I would have thought of this earlier. Of course this might be a one day fluke with a return to hell again soon but at least I had some relief. I need all the good times I can get.

May 29, 2011 - I Feel Awful!!

May 29, 2011 - I Feel Awful!!

There is no point sugar coating this, I’ve had a bad weekend. Other than constant nausea (Friday night I had my first “V” incident in almost 3 weeks), mucous production that won’t cease, an inability to put enough food into my stomach to avoid losing more weight, and an overwhelming fatigue that keeps me napping several times a day, I feel fabulous!!

Judging by the responses to my last posting, I may have given people the impression that since treatment is complete, it’s just a matter of a short time before I’m failing at golf again. Nope. I don’t imagine I’ll be doing much of anything until after summer and then, maybe. I still have to learn to eat again once my mouth starts healing from 7 weeks of being burned. That won’t happen overnight. My nausea has to subside so my digestion returns to a pace that allows me to “eat” enough to sustain my existence. I have to gradually get my strength back and as most of you know, it was already compromised by my muscle wasting problems. I have a long road ahead of me.

Emotions:  I’m definitely having moments of discouragement where it feels like this will never end. I know it will and I just have to ride this out the best I can. My wife continues to do all she can for me as I encourage her to go out and enjoy normal activities. She’s doing that. I’m hanging in there. At least I’m done being poisoned and burned. Time will take care of the rest of it. I have to believe that.

May 27, 2011 - Treatment is Over

May 27, 2011 – TREATMENT IS OVER!!!!

Radiation treatment – 100% complete. Chemotherapy treatment – 100% complete. YES!!

Now the recovery begins. I feel so-so physically after seven weeks of abuse but I know this too shall pass – it will just take some time. I know I have up to 2 or more weeks of more pain, more mucous and probably more nausea as the effects of the treatment run their course.  Then I can look forward to less pain and more swallowing - gradually. I succeeded tonight by twice swallowing some of a banana/chocolate milk shake and while swallowing wasn’t hard, my tongue and throat are still way too sore to tolerate much of it. My NUMBER ONE challenge will be to be able to eat normally and that will come when pain subsides and my mucous production drops off. Right now my swollen throat is a sponge for mucous or anything else I might try to swallow. It’s going to be IsoSource for nutrition for quite a while yet. I’ll also be taking pain meds until I can start to reduce after pain becomes less and less and issue. I’m sure that will be hit or miss and a bit of a judgment call.

At this point I’ve lost about 10 pounds. I think I look awful.  I’m told by all my doctors, nurses, and technicians that I’ve done extremely well.  The tell me that some can’t finish the chemo, some end up in the hospital for nutrition or other reasons, and some just have a combination of many problems that can delay their treatment.  I managed to miss all that so I’m thankful my body handled this as well as it did.

I go into this last half of recovery with my eyes wide open. Only time will tell if the radiation and chemotherapy got it all. I’m going to assume it did until I’m told differently.  RadDoc could find NO SIGN of a lump yesterday.  I’ve given it my best shot and have had excellent medical care so I have no regrets about anything. I would only say to anyone who finds a small lump in their neck to NOT ignore it. Finding this sooner would have been better.

I’m keeping my Hannibal Lecter mask; Joanne might turn it into a planter of some sort. She’s very creative that way. I’ll also continue blogging for the foreseeable future until there’s nothing left to say. This is the start of phase 2. I want my life back!

May 25, 2011 - Five Cans Will Do It

May 25, 2011 – Five Cans Will Do It

I have a heck of a time eating (eating? tubing) 5 cans of IsoSource each day always ending up with only 4. But for 3 straight days I did manage 5 and my weight quit falling off – indeed I may have even gained a pound or 2.  Today, not so good.  I woke up at 3:30 for my “morning” feed but only got about half way done when nausea started creeping in.  I gave up and went back to bed. I went to RadDoc for my treatment at 8 AM but ended up lying down for about 15 minutes until I felt like I would be ok under that Hannibal Lecter mask. They also gave me extra nausea meds and it eventually worked out. Then I came home and slept until Noon. Only my wonderful wife’s check-in phone call woke me up. I managed to get another can of IsoSource (IsoSauce? IsoSludge?) down but still feel lousy.

I mentioned last week was the slowest one yet and that still holds true. Even with today’s miseries this week seems to be moving along just fine. Yesterday was my last (LAST!!) Chemo day except for extra fluids and blood work check-ups.  That felt like a milestone was reached. Three more RadDoc visits (2 Friday) and I’m done, done, DONE!

My pain seems under control again but I still can’t really swallow anything with any flavor so water it is for now. My mucous problem also is less of an issue this week for reasons that aren’t apparent. I’m supposed to start feeling better in a couple weeks after treatment (gradually….very gradually) and hope to start eating more normally at that point. Once I can eat enough to maintain my weight, the feeding tube is removed. I’m told it will be several months before that happens. I’m not challenging that but I’m hoping to do better.

Emotions:  I’ve run the gamut from feeling very positive to wondering if this is all going to work out. I know treatment will end but what then? How much of my old self will I get back. Will I lose interest in activities I’ve always loved? Golf and music are on a back burner even though I could physically play my instruments during good days. I’m not doing that. No interest at the moment.  I know most relationships will strengthen including my marriage as Joanne and I have learned to appreciate each other more. I’ve also learned to appreciate the overwhelming giving nature of my many friends.  But I do hope some of my old cantankerousness returns or I won’t be me. Many unknowns. But I’m driving this bus so I intend to make the best of it.

A (Sun)day in the life........

May 22, 2011 - A (Sun)day in the life….. So busy yet so bored…..

Another boring but busy day so I thought I’d go through what my average day is like here on a weekend. My day really starts at Midnight; I “live” a 24 hour lifestyle. I’m usually sleeping at Midnight but by about 1:30 or 2 AM I wake up to clear my throat of the 4 gallons of throat junk my snoozing has produced. Then I drink some water the old fashioned way followed by more water through of my feeding tube. I’ve done a good job of staying hydrated throughout this. I then smear my neck with healing cream as I’m pretty badly burned now on the left side of my neck. After more throat clearing (many, many times) off to sleep I go again only to wake up about 4 AM for more of the same. This time I decide to eat more of my only food – IsoSource and either finish the can or eat enough until I feel I can’t handle any more. I then have to stay somewhat upright for 30 to 45 minutes after I eat so I sit in the living room lounge chair and doze off. I awake after about 45 minutes and it’s now 5 AM. Then more throat clearing and back to bed for more sleep.

I awake around 7:20 and it’s time for my anti-nausea pill (every 8 hours). I go to the bathroom, cough up more mucous, take my pill, take in more water and off I go to another can of IsoSource. I dream about food now as I know my body is craving it but I can’t eat anything due to throat pain (pain is minimal when swallowing water but any food at all…….OUCH!). I’m essentially slowly starving and have lost about 10 pounds now. That’s considered pretty good compared to others. I try to feed myself while simultaneously reading the newspaper. I  balance the syringe on my feeding tube and periodically release and pour more of this fine cuisine into my tube. It’s a sight! I’m getting better at it rarely spilling it. This time it went down fairly easily (no burping or reflux) and I’m done with my morning feed.

Shower time. I have to anchor my feeding tube to something so I use a headband around my neck and use the alligator clip to clip it onto the headband. Then I step into the shower and do my usual cleaning being careful not to make any quick motions that might yank out my feeding tube. Can you imagine? I dry off, unclip the feeding tube and lay it on the counter (picture me standing there with this “umbilical cord” hanging from my stomach onto the counter) while I put a shirt on. I maneuver the tube under the shirt and use the clip again to attach it. I throw on some shorts and socks and I’m ready for action. Now what?

It’s now 10:45 AM and I have nothing to do so I come up here to write this drivel. My day will continue as above with another can of “food” around Noon, an anti-nausea pill around 3 and more mucous removal all day long. I’ll consume more food again around 4 and again in early evening – if I feel alright. At any time today I might get very tired (and a little nauseated) and have to nap for an hour or two. This happens almost every day but I never know when. During this time I have no interest in much of anything and I just lie there waiting for it to pass. TV, movies and sports will kill the time.

That is pretty much it. Tomorrow will be similar except for the 8AM radiation appointment. I really can’t wait until I can eat again. I miss food!!

Week number 6 is done....Tick......Tock......Tick.....Tock..

May 24, 2011 – 2:30 PM – Tick…..…….Tock…………..Tick………….Tock

What does the 6^th week of treatment feel like? The slowest week of my life! Time has just dragged on as each day couldn’t come soon enough. Most of the week I was just feeling lousy. This was mostly because my stomach churned, flipped, flopped, squiggled, girgled, gargoyled, spun, turned, triangulated and generally made me feel like crap most of the time.

I’m now done with week 6 with 6 more RadDoc visits (2 on Friday to finish!!) and one Chemo on Tuesday. But I won’t be done by any means. I have to wait for all the “healing” to continue which will mean more flip flopping stomachs and constant fatigue. I also have to learn to eat again and that means chewing and swallowing real food to a level where I no longer lose weight. Then I can get rid of this life saving feeding tube. I’m told it will be months for that. I think that will depend on pain levels in my throat as well as adjusting to limited saliva production and getting an appetite back. Despite essentially starving, I’m never hungry – only achy, churny, icky, bleahhhhhhh.

On the good side, my pain patches seem to be doing the job even as they contribute to my generally grogginess and indifference to everything. I don’t have to take any “breakthrough” meds because of increased pain. I can’t imagine how much pain I’d be in if it wasn’t for these narcotics; I don’t want to ever know.

My chemoDoc techs tell me I’m doing extremely well as some people can’t handle this many chemo treatments (6 so far). I’m not anemic and my immune system is still functioning and that doesn’t always happen I guess. Everyone involved says I’m doing great but, like pain, I don’t want to know how someone NOT doing well is feeling. I’ll take their word for it.

And then there’s my skin. Much of the left side of my neck has layers of skin peeling away from the radiation; I’ll be super sensitive to sun for life. I coat my neck with 10W40 motor oil to keep it moist (ok, it just feels like 10W40; maybe it’s 10W30). I’ll have nice new pink skin at some point. The skin problem is really only a nuisance.

So now I have the rest of today and another boring weekend to endure and then on to the finish line of week number 7! At least after Friday I’ll be done with the Hannibal Lecter mask but I still may go to ChemoDoc for extra steroids and fluids. I may also receive anti-nausea drugs as the chemo takes its good old time leaving my body. So until next time….zzzzzzzzzzzzz.

"Time keeps on ticking, ticking, ticking away."

May 17, 2011 – 8:42 PM - "Time keeps on ticking, ticking, ticking away."

I’m in a bit of a fog. It’s kind of nice have an excuse to feel stupid. I think I’ll remain that way for a while so zombie writing might be what shows up here.

Today I completed my 6^th of 7 chemo treatments and have only 9 more RadDoc trips to complete (end of next week – YES!!). The “light at the end of the tunnel’ is within view. I know I’ll still get worse from what I’m told but that, at least, will be the beginning of the end of the misery.

My fog is likely due to me trying another pain remedy – Fentanyl pain patches. As noted earlier, I just about O.D’d on a 50 MG patch on Saturday.  As of 3:30 PM today I’m now trying a 25 and 12.5 in combo. At this point pain is tolerable but I am really fogged up.  No trembling or sweats so far (please be ok). Tomorrow will probably tell me more.

I’m on my third nutrition supplement called IsoSource. This one is less sugary than Boost and Ensure Plus so it might be less filling as I do all my feeding by tube. That’s been part of my weight loss problem. I can put this stuff down my feeding tube but if there’s “no room at the inn” then it’s not going down; my stomach empties too slowly. Soooo…yep…another prescription for something that speeds that up.  I’m now feeding at any and all hours. Last night I “ate” at 2 AM (half a can) and again at 6 AM (a whole can). I have yet to get 5 cans of anything in me in a 24 hour period and thought today would be it but I’m at 3.5 cans with more to go after I log off here.

Emotions – Yeah, I’ve been in a bit of a funk recently; my ability to find humor and positive thoughts has been missing. This disease and treatment is all that it’s advertised to be. It’s horrible.  But I do have glimmers of good thoughts creeping in during those moments when I realize how far I’ve come. I’m hanging in there, taking each day, or even each hour as it comes.  Feeding and bedtime coming soon. 

Sobering Weekend

May 15, 2011 – Sobering Weekend

Early Afternoon……

Yesterday (Saturday) wasn’t a good day. I had upped my pain med patch to a 50 only to wake up feeling horribly out of sorts. I didn’t have appreciable pain but my body was feeling like I was overdosing, not that I know what that really feels like. As the morning wore on I got worse:  cold sweats, trembling, a sense that something worse was going to happen. I was scared. I called the weekend RadDoc on duty and after much conversation I took off the 50 patch and went back to a 25. I, again, augment that with some oral Oxycodone. The day gradually improved but only compared to what I felt earlier. I admit feeling a bit defeated all day long.

I’m losing weight and can’t seem to consume enough calories to prevent it. Even after 3 hours without a meal my stomach feels full. I have no problem with the feeding tube but if there’s no room, there’s no room. I can’t help but wonder if I’ll shrivel up before the treatment is complete.

Controlling pain and nausea is a moving target. No vomiting since last Sunday’s misery but as I write (1:20 PM), I’m not sure my day will continue that way. Took more anti-nausea meds and it usually puts me to sleep – which is fine with me. Mucus production is running full tilt. It’s just totally gross.  I’m having skin problems in various places from the radiation but this is the least of my issues. It’s very leathery in spots with a lot of peeling.

Early Evening…

I slept off much of the drug effects so I’m almost conscious now. No vomiting. I should eat 2 more Boosts today but I don’t know if I’ll be able to do it.  Weekends are not so much fun since the clock stops on the number of treatments. I still have 2 weeks left. I only hope the equipment doesn’t break down - they tell me it does happen. Two more weeks, two more weeks, two more weeks………..

Pain and Inspiration

May 13, 2011 – Pain and Inspiration

Yesterday I discovered a new level of pain. I was caught completely off guard and really suffered until I stuffed some extra pain meds into my tube. Owwwwww!! My burned up throat was on fire.  Just yesterday morning I mentioned to RadDoc that I may not need more than what I was currently taking. Wrong!! About 6 hours later I had that script at the pharmacy to be filled. I was told it will get worse; I didn’t listen. I’m supposed to be pro-active in regard to pain and nausea and I’m better now. Don’t be a friggin’ hero. Drugs are my friend.

On another note, I’m getting the hang of the feeding tube. Of course every new success has to breed a new problem and mine is my skin. This info is more for a future feeding tube patient but I want to write it down while I still have a brain. I have to attach the tube someplace or it would just hang from the middle of my belly.  It has to be somewhere on your chest. Unfortunately even paper tape starts to irritate the skin after a short time. I have blotches and scabs already that I can’t imagine becoming anything but worse. I needed a way to avoid tape on my skin and I came up with this:  I have some old tank top undershirts, often called wife beater shirts. I rigged the top of the tube to the top of the shirt and clamped it to the shirt with a large paper clip. The alligator kind.  Fits perfectly. I tape the bottom part of the tube (where the release clamp is) to the bottom of the shirt and that took care of the skin issue. Nobody taught me that and that’s my first disappointment in the care I’ve received so far. I’m teaching them! Not good.

Feeding is becoming routine.  There’s no way I can call it eating. Eating is an enjoyable activity. You actually get to taste what’s going down. Feeding is just that: stuffing nutrients into a living organism.  All I “feed on” now is Boost. I still drink water and juice by mouth to keep my swallowing going but eating as I know it is done for a while.

I have two weeks of treatment to go. Two more with Chemodoc; eleven more with RadDoc.  The lump on my neck is almost non-existent. Yippee!!!!! Mucous problem is just totally disgusting. I’m gross. I think I've lost about 5 pounds. The skin on the left side of my neck looks like it suffered 3^rd degree burns. I’m still told the side effects will continue getting worse and I AM listening. New pain patch, refilled nausea drugs.

Ready to get to the finish line.

Fun With Feeding Tubes

May 11, 2011 – Feeding Tube Management

If you’re a man reading this (or hairy woman I suppose) and you’re going to get a feeding tube I strongly suggest you shave the hair off much of your chest. Tape doesn’t stick to hair well; just well enough to hurt like hell when you peel it off. Hair doesn’t really have to be shaved just trimmed down to a stubble growth so it’s out of the way.

Since tube installation on Monday it’s been a learning process. How to use it, how to clean around it, how to keep it taped to your body etc. But I’m learning. You stick the large plastic syringe in the top of the tube, put food or water in there (up to 60cc), and then release the clamp that is half way down along the tube and let it drain into the stomach. Unfortunately you have to do this a little at a time so it might take 30 minutes to consume 4 ounces of food. So I sit, walk around, release food, stand and read, release some more food and try not to get careless. If I’m careless the syringe comes out of the top and you dribble what’s left of the contents all over the place. That’s happened twice (clean up on aisle 11). I’m getting there though.

My throat is remarkably less sore than it was but swallowing is only slightly easier due to my burned and swollen throat. It’s messing up my swallow reflex. I tried to chew some cereal with milk today and my tongue got real sore and I still had to swallow several times for one gulp. I gave up on that. I still must swallow though or the reflex atrophies. The feeding tube works but I sure as hell don’t want to be using it long term. As I write this I’m drinking Boost the normal way; it’s easier to swallow than solid food. I’ll be feeding myself both ways going forward.
Tomorrow will be the real test (Thursdays have been bad for me) of my new anti-nausea meds. I took one this morning before radiation and an hour later I was back in bed sleeping for 3 more hours! Phenegren I think it’s called and it DOES make you sleepy. I’m willing to trade barfing for Rip Van Winkleville any day.
Good news on treatment dates. I will now be finished on May 27^th instead of May 31^st. This is as long as there are no equipment failures along the way (it happens so they tell me). Blood counts are in an “acceptable to good” range so chemo continues for two more weeks. I’m 62.86 percent done with RadDoc. All good.
Emotions – I’m generally feeling alright about all of this as I’m now into my 5^th week of treatment. I feel like I saved several days of misery with my end date moving up.  The lump in my neck has shrunk to a point that I wouldn’t even pay attention to it if I wasn’t aware I was sick. The Docs all say I’m doing very, very well so that’s good to hear (just not sure if they tell everyone that). My wife Joanne continues to be the perfect caregiver and my friends keep reminding me that they are thinking about me through comments on my blog, cards, phone calls and texts. I’ll be glad when this is over with but feeling very positive at the moment and looking forward to getting my life back.

Cancer Boy Has Two Mouths

May 9, 2011 – Cancer Boy Has Two Mouths

Yep. I had the feeding tube installed today. Now I have a tube sticking out of my belly about 2 inches above my navel and 1.5 inches below my breastbone. I just tried it for the first time with water to see what would happen. It worked. I’ll try food before the night is over. Food…well Boost anyway. I don’t feel very well so we’ll see if it works.

Since my Saturday posting it’s been back to Space Mountain. Saturday was a good day until later into early evening when the pain in my throat started getting worse. I’m wearing a “pain patch” now and was also taking an extra 5mg of Oxycodone every 5 hours or so. I bumped that to two pills every 4 hours and after about 20 hours of that, the pain returned to its regularly scheduled level.
Last night wasn’t bad either – once early afternoon arrived.  I managed to swallow 4 Boosts and something else along the way. Well….about 9:30 last night I suddenly, and I mean suddenly, rushed into the nearby bathroom and returned one of my valuable Boosts! I mean I went from feeling generally ok to Barfburg in 60 seconds. Now I’m afraid to be too far from any facility.

Tomorrow is day 5 with ChemDoc and day 21 of RadDoc.  The nausea from the chemo (or everything at once) has become my number one problem. Can’t keep food with me. Here we go again.

It's Shrinking!!

May 7, 2011 – It’s Shrinking!!

It’s Saturday morning and I think I could write a book today. But I’ll try to limit it to facts. The good news is that the lump on my neck (lymph gland) is now shrinking. Joanne confirmed it as I’m sure the RadDoc will on Tuesday. Yea!!

Yesterday was a 5 banger. I visited 5 separate health care providers in one day. Who says I don’t have a job? First was RadDoc (54.286% completed) followed by a visit to the gastroenterologist to discuss Monday’s installation of my PEG 2 tube (feeding tube). Then it was off to a place called The Medical Mall where they processed the upcoming surgery with a million forms and questions. Then to ChemoDoc to receive fluids, steroids and anti-nausea drugs (3 hours for that). After that there was an unrelated visit to my optometrist to get a few eyelashes plucked out. This is unrelated to cancer but I have a chronic problem with eyelashes growing toward my cornea on my right eye. Makes it feel like something is in my eye all the time. Done.  Five in one day.

Yesterday I actually ate enough calories to maintain my weight. No nausea so I ate (drank I guess) 4 Boosts (don’t think I’ll continue with Ensure – makes me sick) and a few other small items. Today is starting off good as well but I never know when “Nausea Nate” will show up. I think fever and nausea are worse than pain because I have some control over pain. Enough drugs and pain subsides enough for reasonably comfortable living. With “Nausea Nate”, you can’t do anything. No fever for me since my 102 on Tuesday. They still don’t know why I got that.

Gross Alert!! Gross Alert!! - Don’t read on if you’re easily grossed out because what I’m going to write about is disgusting. Mucositis. As treatment continues my increasingly burned tongue produces more and more mucous. This stuff is better than Super Glue. Imagine the proverbial “molasses in January.” This gunk forms in the back of your throat and sits there defying removal. Hacking, spitting gargling and a jack hammer aren’t going to remove this crap. It’s easy to choke on and hard to spit out even as you are ready to. It sticks to everything and anything. If the Shuttle Challenger had this gunk in those “O” rings in 1987, it wouldn’t have crashed. My best efforts include a constant rinsing with a mix of salt/baking soda and water but my best solution yet has been in the shower. There I can load my mouth up and really unload like a volcano (imagine this if you will: head back and blllllaaaackkkkkkk!!!!!!!). Gross isn’t it? That’s my life at the moment.

See? I told you not to read it.

Half Way Home

May 5, 2011 – Half  Way Home!! And The Worst Day Yet

Today was day 18 of 35 treatments so I just passed the half-way point. Yea!!!!

That’s all the good news. There’s no sugar coating this one but today really sucked. After sleeping well (pain meds) I got up feeling halfway decent – for about 5 minutes. Then I took my anti-nausea med and more pain pills. My RAD appointment was later today (11:30 intead of 8:30) and so I tried to eat. It took 2 hours to consume an Instant Breakfast smoothie and a bowl of oatmeal. The growing nausea was getting to be too much. Each spoonful was followed by 10 minutes of lying down. I’m told my problem is probably due to chemo (hits people after about 2 days; it’s been 2 days).I went as scheduled and took my barf bucket with me and immediately went to an exam room to lie down. I knew I was in trouble. They gave me more meds for nausea and it didn’t matter. Some of my breakfast returned. The new med finally took effect and I finished my treatment and went home….and slept for another 3 hours ( I also slept another hour between breakfast and my appointment).

Nearing the end of week 4 I think beginning to understand this better – well maybe. I thought my eating problem would mostly be because of the inability to swallow due to pain and throat damage from Buck Roger’s Ray Gun ( I know young people are asking:  who the hell is Buck Rogers). The feeding tube I’ll be getting would solve that problem. However, I’m beginning to understand that my body’s total rejection of anything “food” is the problem. Feeding tube or no feeding tube, with nausea, food isn’t going in easily and may not hang around. Hence weight loss. I’m still hovering at 142 (my normal weight) but I sense it will start coming down soon. Just can’t eat enough – yet I can still swallow.

On a small good note, no return of my 102 fever so far. Tomorrow I have the chemo treatment without the chemo (liquids and steroids and anti- nausea meds etc.) which is supposed to perk me up. We’ll see. I recovered from my nap, my nausea is gone and I ate without incident this evening. Great conversation:  “how are you today?” “Well, I ate without incident.” Progress baby!!!

Roller Coaster Ride

May 3, 2011  - Roller Coaster Ride

First, a note of thanks to my wonderful Saturday golf friends. I received this card (see photo) today signed by the guys who take my money each week and ….oh…now I get it. Get well you pigeon!!! Seriously, I do appreciate everyone’s concern and I hope anyone going through this has the good support of friends and family as I do. My wife, Joanne, also continues to be a loving advocate for my recovery with her tireless effort at doing everything for me and taking care of every detail. And no, she’s not getting fat like she feared she would.

After last week I was beginning to wonder how bad this was going to get. I know I’ll still get worse but at least much of this week has been better in many ways. But first the bad stuff:  I didn’t have a good afternoon yesterday. I had decided to postpone my PEG (feeding tube) to see if I could just live on Ensure by drinking 4 or 5 cans per day. On can number 3 (I think) I struggled to finish it after postponing doing so for about an hour. I finally did finish it at about 4 PM. At about 4:10 it did its “I’ll shall return” bit and that was the end of that idea. I’ll probably still drink some Ensure but I have also started the process of scheduling the installation of the PEG in case my throat gets real bad again. It should be sometime in the next 5 days. A “just in case I need it” decision.

On that front, I’ve had pretty good pain control with the Oxycodone but so-so nausea control. In other words, if I had any kind of appetite, I can eat more food than I could when my throat was on fire.  I’ll be going on a pain patch in a day or so and I’m adding an extra day of IV (Eye-vee) nausea meds (on Friday) as well as the steroid boost and fluids I usually get with chemo. We’ll see how that goes. But I know my throat pain and swallowing ability will continue to be an issue.

I’ve completed 16 RAD and 4 CHEMO treatments as of today.  ChemDoc said my labs are still good (not anemic etc.). I hit the half way mark on Thursday. From lack of food I’ve dropped a few pounds. I shaved off what was left of my beard; it was falling out anyway (the mustache may go next {after 41 years!})

Emotions: Those of you who’ve been to Disney World and ridden Space Mountain, remember it as a roller coaster in the dark. That’s what this feels like. You know you’ll have ups and downs but don’t know when. On days like today I get back to hoping that last scary hill was the last one but also knowing it probably isn’t. But like Space Mountain, this ride will end too. Loving life. I think I’ll go nap.

Five hours later – Space Mountain struck again. My temperature went to nearly 102 and I’m miserable again.

May Day!!

May 1, 2011 – May Day!

I’m happy to be in the month of May since my treatment ends this month (yeah, the 31^st but it’s something). Today I thought I’d chronicle what is becoming a typical weekend day in my life right now.

If I start after midnight I find that I’m up several times for bathroom breaks (too much M.O.M.) as well as to take Benadryl, an anti-nausea med and the all-important pain pills around 4 AM (I tend not to miss my times for those pain pills). Joanne claims I don’t wake her during these nocturnal treks to the outhouse. I wonder. I managed enough sleep and got up at 7:30, took some Carafate (reflux preventer) an anti-nausea pill (the one I forgot to take in the middle of the night) and then some “Viscous Lidocaine” to numb my throat so I could eat something. I gave cereal a shot with limited success and ended up with good old Ensure. I read the paper for about an hour and my eyes glazed over and I went back to bed. Got up after an hour, took a shower and slathered on some skin cream to counter my gradually worsening skin around the radiated area as well as this persistent rash the cause of which is still unknown. Brushed my teeth (should have done that earlier – need to keep my teeth healthy) and on to reading email and more of the paper.

My band has a gig this morning so Joanne and I went to the town park (I was dressed like a sun protected dork) to visit them for a while. Upon returning I had to again contemplate what I could eat. I went with egg salad and another Ensure and a handful of peanut brittle…….. (yeah, just seeing if you’re paying attention). It took its painful time getting down but another meal is complete. Nap time again. Let’s see…..”you know you’re getting old when eating wears you out?" After nappy time I took my Thrush meds (one more of those to go) did some ironing and sat around and watched a hockey game. Oh…time for another anti-nausea pill too (3 per day). Drinking sips of water all day.

In a few hours I have to contemplate my next gourmet meal, take some more pain meds, drink some more Carafate, eat, shower, put more cream on my burns and finish the day with a good flossing, brushing, fluoride coating, and saline, baking soda rinse.

A note about pain: My thrush seems to be gone so all the pain is in my throat now. The pain is mostly during use (swallowing, talking, singing opera etc.). When my throat is relaxed, there is much less pain which I suppose is why I can sleep. However, tomorrow I’ll be letting RadDoc know I want a feeding tube – called a PEG.