Day 22, 16/35 days of Radiation

The pain in my mouth has gotten significantly worse over the last few days.  I've been taking the Oxycodone I was prescribed on and off since the weekend and that has been saving me.  Without it my pain level is about a seven today, so I have a feeling I'm going to have to take it more regularly.  The Oxy I have only lasts four hours but I found out there's an extended-release.  So tomorrow at my weekly doctor check-up I'm going to discuss my pain and see if he can write me a prescription for that.  I really don't want to be on this strong a pain medication for what will be around thirty days but I don't know how I'll be able to cope without it.  Too bad they can't just put me in a coma until this is all over.  I know that wouldn't be ideal for many reasons, it would just make this a whole lot easier to endure.

I've changed my feeding intervals from 6, 8 ounce feedings to 3, 16 ounce feedings.  It's a lot more convenient and my stomach has been able to tolerate it fine.  That makes my daily calorie intake over 2100 and as a result my weight has been holding steady just over 150.  Also, the rash around my g-tube is clearing up and the discomfort of it has decreased which, of course, is good.

I'm also working out the kinks in my feeding routine.  I've been trying to feed after I get ready for work.  Yesterday that was somewhat disastrous because when I'm hungry my stomach pulls on my tube which causes stress on the hole in my abdomen which cause pain and discomfort.  Add to that the tube cap kept popping open leaking stomach juice on my clothes and floor.  Wonderful, isn't it.  So today when I woke up I fed myself right away, then took a shower, then got dressed.  That stopped the tube pulling first, allowed me to clean up and properly secure my tube and then get dressed without any leakage occurring.  That worked out a lot better.

Lunch is no problem, I just need to do it around 1:00 PM to give me enough time to last me to dinner.  I try to do dinner as late as possible, around 8:00 PM so that it lasts me most of the night so my little stomach demon (That's what I call the tube pulling, because it's like a little demon in my stomach yanking the tube.) doesn't wake me up at 4:00 AM.  If all goes well I'll keep my little stomach demon happy and he'll leave me alone.

I'm still trying to get switched from bolus syringes to gravity bags but I've been getting stonewalled by my primary care doctor's office and the supplier.  They're saying I need to come in for a visit.  WTF for? I asked in not exactly those words.  Because they need a paper trail, they said.  Why didn't I need to come in for the syringes they ordered them a couple weeks ago.  No answer.  What are they going to do at the "office visit" that they can't do over the phone?  Nothing.  So they want me to come in just to tell them I want to be switched to bags because the syringes are a PITA and when I go back into chemo this week and they want me to drink 3 liters of water I'll have to refill my syringe 50 times to get there!  Seriously!?  Whatever.  I scheduled an appointment for Feb. 7th.  That was the earliest I could get in there.  I also asked if she could just submit it to my insurance to see if they would approve it.  She said she would.  After I got off the phone with her I just found them online and ordered them myself.  Hopefully I'll get them before the weekend.  Tomorrow I'll just have to do my best to get all that water in me.

This Thursday is my half-way point.  I'm so looking forward to this weekend because it's been my goal to keep working up to that point.  If I can still work past that point that will be icing on the cake, but next week is going to be rough.  The five days following chemo are the roughest, so we'll have to see how I do.  After Monday I have 3 more weeks of radiation ending with 1 more treatment of chemo.  Once I make it through all that then there will be a good couple weeks of initial recovery.  So, hopefully around March 1st I'll start coming out of the woods.  Breaking it down like this really helps me.  Just need to make it to this weekend!

Day 16, 12/35 days of Radiation

Pain in my throat and mouth has been pretty high the last couple days.  This morning I spoke with my doctor about this and he said it will probably be like this the duration of treatment and may even get worse.  Right now I'm taking liquid Tylenol which is only taking the edge off.  I'm only taking it a couple times a day to avoid the negative affects of taking pain medicine for an extended period.  Likewise I want to hold off on taking something stronger as long as possible.

The pain really isn't too bad as long as I don't talk, cough, yawn, sneeze or try to open my mouth too much.  It's very similar to how my throat felt after my surgeries, but this will be lasting 5+ weeks instead of the 2 weeks of recovery post op.

I've pretty much switched to using my g-tube for nutrition.  Yesterday I was able to get 5 cans down it.  The bolus syringe is really a PITA.  I have to hold it the whole time and if I relax it will pop out of the tube making a mess.  I'm also having to constantly refill it because it only holds 60 ml and a can of formula is about 240 ml.  I have to apply a steady pressure so it goes in, but not too fast or else it might cause me to get sick.  It'll be nice to switch to a gravity bag so I can just fill it once and let it drain.  I'll have to follow-up with my primary doctor tomorrow to make sure the order went through.  If not I'll just order some online and pay for them out-of-pocket.

I saw my dermatologist this morning about the contact dermatitis around my g-tube.  He confirmed does look like classic contact dermatitis.  He gave me a better ointment to put on it.  It looks like it's healing so I'm not that worried about it anymore.

This is a new dermatologist that saw me out of the same office I usually go to.  He was super nice and was very compassionate about what I'm going through.  It's always nice to get a doctor that really seems interested in helping you.

Let's see, what else.  Oh yes!  The ringing in my ears has all but gone away.  It's very faint now and I barely notice it anymore.  That's a relief.  That took almost two weeks to go away.  Hopefully next time it won't last as long.

That's about it.  I keep thinking about all the other people made it through this and it helps give me the confidence that I can make it too.  My radiation nurse did tell me this morning that the treatment for throat cancer is one of the most difficult to endure.  On the bright side it's highly curable.  So, in the end, it should all be worth it.

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.