Day 14, 10/35 days of Radiation

Friday I pretty much lost my sense of taste.  Everything now tastes like cardboard which has killed my motivation to eat.  Over the weekend I experimented a little bit trying to find things to eat that I could still in enjoy.  So far the only things that don't taste disgusting are ice berg lettuce, cucumbers and vanilla ice cream.  Being that they're already pretty plain I have no expectation of flavor so I enjoy them for their texture and coolness.  Which is welcome due to the sores and rawness that I started feeling in my mouth as of Friday.

Speaking of which, the pain level in my mouth was about a 3-4 today but on the way home it increased to a 6-7.  So after dinner I brought out the Magic Mouthwash from the fridge and tried it.  Doesn't really seem to be cutting it.

I'm pretty much switched to a liquid diet now.  I have a few protein/nutrition shakes I'm taking.  I'm drinking Ensure Enlive and a couple different Orgain protein drinks.  The Enlive "tastes" or should I say smells the best.  The Orgain which is usually pretty good has been reduced to tasting like liquid chalk, but being that it's liquid I can just down it.  Far worst is the formula that I received as supplemental nutrition.  That I'm going to have to put down my g-tube to tolerate.  I basically have to take down six of these a day to get my full amount of daily calories.

Not being able to eat really sucks!  I'm bombarded with food commercials, restaurant smells and general delicious food sights and smells everywhere.  This really is Hell.  Now I'm REALLY counting down the days!

Let's see, what else.  Still have a rash (contact dermatitis) around my g-tube.  I've been putting hydrocortizone creme on it and it hasn't spread and looks like it's getting better.  I have an appointment on Friday with my dermatologist so we'll see if they have anything better to offer.

The ringing in my ears is still there, but seems like it's getting incrementally quieter each day.

I did do another g-tube feeding last night and it went in pretty good.  Holding, refilling and repeating the process until completion with a 60 ml bolus syringe is a pain in the ass.  So I requested I be switched to gravity bags from my primary care doctor today.  I could buy them online, but why pay for them if I can get my insurance to pay for them?  If they don't switch me I will end up buying them myself.  It'll save me countless hassle.

My weight is holding at 149.4 for the past few days, which is good since I know I haven't been getting the calories I should.  I really need to make more of an effort to get the calories I need.  I've had to make a lot of adjustments in the past few weeks so I'm not getting worked up over this.  I just need to make that one of my goals.

February 20th cannot come fast enough.  Until then I just need to distract myself with work and other things so I'm trying to keep my schedule busy.  The less I think about it, the better.  Then hopefully, before I know it, the 20th will be here and I'll be done.

Day 9 (Since Beginning Treatment), 7/35 days of Radiation

Today was pretty good.  After all...it's hump-daaaaaay!

G-tube is getting less of an annoyance allowing me to sleep pretty good last night.  I did try to put a protein drink down it last night before bed since I was pretty nauseous yesterday and didn't get the calories I should have.  My mistake was that I let the weirdness mess with my head and I started to feel feint so I had to stop before finishing it.  I think I'm going to wait until the nutritionist/nurse comes out and gives me a proper demonstration so I can put my concerns behind me.

I've also developed a rash around it.  I'll save you the photos.  Suffice it to say it's not normal.  I do have certain skin allergies, mostly to adhesive bandages and certain tapes.  I had a reaction to the tape they used to secure the gauze to the site after surgery but it wasn't touching the area that is now broken out.  I showed one of my nurses Monday and again today who in turn had my radiation oncologist take a look at it.  The nurse also called the GI department that did the surgery and they, like my doctor, just suggested I put some antibiotic ointment on it.  My doctor said to try that for the next couple days and show him again on Friday.

I also stopped by my oncologist's office today and spoke with a nurse there about my nausea and the ringing in my ears.  She spoke with my oncologist and they prescribed me another anti-nausea medication, so I'll try that.  I've got to get on top of this to prevent further weight loss.  I know I'm below 150 now.  My nurse noticed my weight loss today too and said, "No more." I told her about the nausea but she said I just had to suck it down.  Thing is I'm afraid if I do that I'll throw it up and if that happens it will be either incredibly painful because of the g-tube or it will dislodge the g-tube and I'll have to go back and get it reinserted, or both.  So hopefully the new anti-nausea medicine will work and I can start eating normal, or at least somewhat normal.

Actually, speaking of nausea, today has been pretty good for that too.  I woke up hungry so decided to have a bowel of cereal with strawberries.  I was able to finish the berries but not the cereal.  Then after radiation I was pretty nauseous.  I asked my radiation oncologist and radiation tech about nausea after radiation and they said radiation shouldn't cause nausea.  So afterwards, on the way to work, I ate a handful of saltine crackers and drank water and felt pretty good.  For lunch I had some curry chicken and rice and a bunch of fruit (strawberries, kiwi, raspberries) I packed for lunch.  All of which I had little to no problem eating.  I did try to add some carrots to the mix for lunch, but that was too much so I had to stop.

On the way home I was listening to the Star Wars Force Awakens audio book.  I got to the place where Rey and Finn meet Han Solo for the first time.  That got me thinking of Ham Salad from Space Balls which gave me cravings for macaroni salad.  So on the way home I picked up some macaroni salad and chicken sausage.  Unfortunately when I was able to finally enjoy it at home it wasn't as good as I imagined it being, but I was able to eat most of it which is a win.

As for the ringing in my ears it's been happening at various, annoying levels ever since my last chemo treatment.  I mentioned it to my oncologist twice and then again today to the nurse.  They both asked if I have experienced any other changes in hearing or pain which I haven't.  So they just suggested I monitor it and let them know if it gets worse.  However, the nurse said it could last a week or so.  If it's still happening by the time I get my next treatment they'll probably make an adjustment.

Those are the worst things I've experienced so far.  Aside from that I'm starting to have some dryness in my mouth and I'm feeling some tightness on the right side of my neck.  I'm not sure if that's from the radiation or the scar from my neck dissection.

I've just trying to stay focused on the end game today and distracting myself with work and making plans for the future.  My older son just bought a motorcycle and I think of all the fun we'll have riding together after all this is over.  Amazing how distractions can take your mind off the crap you're traveling through.

Radiation/Chemo Week 1 Summary

Wow! I knew this week was going to be tough, but not this tough and not for the reasons I'd expected.

Radiation Treatment

I started radiation on Tuesday, Jan. 3 and completed four sessions this week.  The first day I felt a burning sensation in my throat which they said I wasn't supposed to feel.  It lasted a couple hours and went away.  It didn't reoccur on the subsequent sessions.  I spoke to my doctor about it at my Wed. appointment and he reaffirmed that I shouldn't have felt anything but didn't have an explanation.

PEG Tube Insertion

I got my PEG Tube ("g-tube") inserted on Wednesday.  This has probably been one of the worst experiences of my entire life.  I had my reservations and was apprehensive about having it done but I accepted it's necessity so I went in with an open mind.

I went right after my radiation appointment and got checked in.  I was told by the scheduler that the procedure would only take about a half hour with an hour or so for observation to make sure everything was stabilized.  This gave me the sense that this was going to be a simple, quick procedure.  My appointment time was for 1:00 PM so I expected to be out of there by 3:00 PM at the latest.

They got me prepped and the surgeon came in around 1:30 PM.  He spent about 30 minutes explaining the whole procedure which was very reassuring and gave me confidence in his abilities.  However, during his walk-through he said the procedure would take about an hour and a half.  I was taken a back at the discrepancy but whatever.

Then he asked the nurse when I was scheduled to begin the procedure.  She said immediately, which was the right answer, but he kind of gave out a chuckle then said that the team that was supposed to assist with the surgery had just left.  WTF!! I thought to myself.  It was already 2:00 PM, an hour past my scheduled start time and the team assigned to me just decided to go AWOL!  They talked about substitutions but thankfully one of the nurses was on top of this and got everyone rounded up and I was finally ready to go around 2:30 PM.

So the procedure began. Here's the basic rundown.  They stick a long, thin tube down my nose into my stomach so they can inflate it.  Wee! Sounds like fun, huh!?  That in itself was uncomfortable, to say the least.  Then they do a CT scan of my abdomen to see where my stomach is.  After that they stick a long needle into my stomach through my abdomen and pull my stomach up against my abdomen.  They then put three other needles around it to secure my stomach to my abdomen and remove the central needle, expand the hole and insert the tube into the center.  The end result is what you see in the image to the right.

They gave me some gauze and flushing syringes so I can dress and flush it until a nurse/nutritionist can come out and get me setup on formula.  I was kind of disappointed that the discharge nurse didn't actually walk me through caring for it in the hospital.  She just walked me through it "in the air", but didn't actually doing it on me.  She even said that if I wanted more information on caring for and maintaining it I could just "Youtube" it.  Never thought I'd hear that coming from a nurse.  I look up how to do things all the time on Youtube so I guess I just was accepting of this.

So around 5:00 PM I was discharged and went home.  I had worked a bit in the morning from home and I was planning on finishing up the rest of my shift into the evening.  But that wouldn't come to pass.

I sat back down at my desk and began to work but it wasn't long before I began to experience an intense, level 10, sharp pain piercing my stomach.  It was like someone repeatedly stabbing me in my abdomen.  It is by far the worst pain I've ever felt and was only getting worse.  I knew I had to go back to the hospital.

My wife took me back to the hospital but the GI department had gone home for the day so she took me to the ER which was very busy.  She had the wits about her to call my chemo doctor to see if he could get me in to see what was going on.  I remember her telling pretty much everyone on the ER staff that I had just had my g-tube inserted there and I needed to be seen right away to find out if they didn't screw something up.  Maybe not in those exact words but I'm sure she was kicking ass and doing everything to get me in there.  Well it worked!  Between her and my doctor I got in there really fast.  My intense moaning/screaming, literally, every minute from the intense pain might have carried a little weight too.

So I'm now in my room in the ER and they brought around a portable X-ray machine and did another CT scan.  They said the tube placement looked good.  The doctor on staff came by and put me on pain killers, morphine I believe, but that didn't cut it.  I was pretty sure it was being caused by spasms and suggested that possibility to him.  He pretty much just wrote it off and said he was going to check me into the hospital.

Luckily his shift ended and he handed us off to another doctor.  I brought up the spasms to him and he didn't seem convinced much either but when we asked if we could at least try a muscle relaxant he was open to the suggestion and ordered it.  I then asked my wife what do people do for muscle spasms and she said "massage and heat".  So I began massaging the area around my g-tube with my finger tips, just like a cat would, and to my relief the spasms stopped and the pain did as well.

We also got a heat pack from the nurse and applied it as well.  They then came by with the muscle relaxant which I took and shortly thereafter the pain all but disappeared.  That was about five hours of pure hell.

I continued with heat and massage on and off throughout the night.  I think the muscle relaxants helped for awhile allowing me to stop massaging and get some sleep.  It was hard to keep track of time because the clock was broken in my room.

It was stuck at 7:34 the whole night.  I asked the staff repeatedly to fix it.  All it needed was a AA battery but none of them bothered much with it.  Yes, I could have used my phone but when you're dealing with something like this you don't want to have to continually check you phone for the time to see how fast or slow things are moving.  Having it right in front of you makes it easy to keep track of.  Besides, for the longest time, about 5 hours, I just thought it was actually 7:34.  Having a clock that doesn't move is really disorienting.

Finally in the morning I saw a janitor and asked him if he could replace the battery or at least swap the whole clock out.  He didn't have a battery so I told him to just switch it out with the one at the nurses station.  Thankfully he did and I now had a working clock and a sense of what time it was.  Now maybe that clock would get fixed if the nurses had to deal with it.

With the clock fixed I could easily keep track of time and I knew I wanted to stay on schedule for radiation and chemo that day.  The doctors were still planning on admitting me to the hospital but the massage and heat were working so I just wanted to get out of there and get on with my day.  I didn't want my radiation or chemo to get pushed back.  I asked them if they would just write me a script for pain meds and muscle relaxants and discharge me.  They checked with my chemo doctor and he said it was alright for me to go to chemo that day.

I was discharged around 9:30 AM on Thur, Jan. 5th and headed straight over to radiation.  I did radiation, went home for a brief break then went and completed my 4 hours of chemo for the day.  My boss allowed me to switch my telecommuting days so I worked from my chemo chair for the time I was there then afterwards went home and finished out the rest of my shift at home.

So far this g-tube has been the worst part of treatment so far.  It's painful and uncomfortable.  I did some reading on the Internet and found that this is pretty typical.  The surgeon said it would take about 2 weeks to get fully set and stabilized.  So I've been pretty much just dealing with it.  I'll probably bring it up at my radiation appointment on Monday and see what they have to say.

Chemo Treatment

So far the chemo has been fine.  I had some problems the first day with urinating.  They give you over 2 liters of fluid during the treatment so you have to urinate a lot.  At first I couldn't go.  I had the urge but I just couldn't release.  I let the staff know and the doctor said that it could be due to the morphine they gave me the night before.  He said they would have to catheter me.

I remembered my last experience with a catheter and didn't want to do this again.  I asked if I could try again and this time I was able to expel 700 ml.  Wow!  I remember during stay at the hospital for my neck and throat surgeries that they wanted to catheter me when the ultrasound showed 500 ml in my bladder.  So, ya, I was beyond capacity.  After that I didn't have any further problems.  All the fluids they gave me probably flushed the morphine out of my system.

My next chemo treatment is 3 weeks out then I'll have another session 3 weeks from then.  So 3 sessions, 2-days each, for a total of 6 treatments.  I'll also be doing labs in between to make sure by blood count is good.

Side Effects

So far I haven't experienced many side effects, which is expected.  Just last night I woke up twice with cramping in my hands.  I also had a slight ringing in my ears which could be a side effect of the chemo drug, Cisplatin.  I was more concerned about the cramping in my hands which I initially though was numbness and could be attributed to the Cisplatin as well.  I called the hotline just after midnight that they have for patients to call 24/7 and to my surprise my chemo doctor picked up, obviously waking him from his sleep.

Wow! I didn't expect him to pick up.  I was expecting a nurse or maybe a physicians assistant but not my doctor.  I told him was I was experiencing and he didn't feel it was anything to be concerned about.  Just some minor side effects.  Of course I'll monitor it and if it gets worse I'll be sure to bring it to their attention.

So far I have been blown away my my new oncologist.  He really has been there for me.  First with the ER staff then last night on the phone.  I'm really impressed with the care and attention they provide their patients.  These people really do care which means the world to someone, especially when they're going through something like this.

I also began experiencing a little dryness in my mouth last night so I began using Biotene mouth wash.  This is probably caused by the radiation.  This morning I started having some distaste in my mouth as well, almost a metallic like sensation which can also be attributed to radiation.

So that's about where I'm at.  Just trying to take it easy this weekend and get a lot of rest, nutrition and prep for the week to come.  Shouldn't be as dramatic; hopefully not.  All I have to do this week is radiation which amounts to a few minutes a day Monday through Friday.  That and take care of my nutrition, monitor side effects, staying positive and praying.

Mixed Messages

OkI've been doing reading and research and have been getting a lot of mixed messages.  It seems like there's two camps.  Those that say you can reduce or even cure your cancer by cutting out sugars, red meats, and alcohol and switch to a diet rich in fruits, vegetables, legumes and whole grains.  The other camp says eat healthy, but cutting out sugars, red meats, and alcohol won't help.

Then there's the statistic I keep seeing that 40% of cancer patients die not from the cancer but from malnutrition.  I could see this being caused by severely restricting your diet to fruits, vegetables and grains.  It's really hard to get calories from those foods.  Then you add radiation and chemotherapy on top of that which reduce your appetite and I could definitely seeing people starve to death.

I think what I need to take away from this is, in the coming months of treatment, I need to place calories as a priority.  I'll try to get as much from fruits, vegetables, grains, fish and chicken.  But if I'm in a deficit near the end of the day I'll need to make an exception to get the required calories.  However, that may be harder to make up at the end of the day.  It may be a better tactic to eat some heavy hitters throughout the day.  I just need to find some healthy heavy hitters.

The last several days I've been tracking my caloric intake and can see I've been falling short.  I've been making adjustments trying to get my calories up.  This has just been a big change and it's a steep learning curve adjusting my diet like this trying to find healthy foods with decent calories.  The hardest part is counting the calories of pieced together meals or when dining out.  It's difficult to figure out calories when the food is not packaged.

My Fitbit app does a pretty good job helping me look up and log my caloric intake.  I also have a scale at home that I've been using to weigh raw foods to get their calorie count.  It will take a little time for me to adjust.  I just need to make sure that during this adjustment period I don't fall too far back, especially before my surgery which is only two weeks away.

Luckily I don't have any food allergies and I can pretty much eat anything without it bothering me.  So my options are endless and pretty much revolve around taste.  I'm not a picky eater and will eat pretty much anything as long as it's decent tasting.  So, I have that going for me.

On a side note, I think I've been a little obsessed with trying to find a reason why I got this. I've been hoping to make a correction with diet, exercise and attitude.  Sure, I can do with some changes in those departments anyway.  But I need to quit playing the blame game.  There's plenty of people who do everything "right" and still get cancer.  As they say, "Sometimes shit just happens."  I just need to keep my head up and keep fighting this thing.