Final Stretch

I'm in the final stretch of treatment.  This week I have four more radiation treatments ending on Thursday and my last two chemo treatments on Thursday and Friday.  The pain in my mouth and throat really hit me hard last Thursday and Friday, yesterday and today it's even worse.  I had to up my dosage of Hydrocodone to 20 ml which I'm taking three times a day.  It's cutting the pain overall pretty good, but there's still spots in my mouth that hurt whenever I try to drink something.

The ringing in my ear from the Cisplatin seemed to be almost gone when I woke up his morning.  Since then it's returned but it seems quieter.  I shook some keys yesterday and they seemed to make a flat noise, different from how they usually sound.  I'm not sure if that's from the Cisplatin or if they've always sounded like that.  I which I would have gotten my ears checked before beginning treatment so I could establish a baseline for hearing loss.

My g-tube has been fine.  I picked up the lotion my dermatologist prescribed for the rash and I've been applying it a couple times a day.  It's helped with the itching and my skin has cleared up around it.  My weight had dropped to 146 pounds but I'm back up to 150 now.  I also ordered some dumbbells online to that I can start lifting some weights and get some muscle tone back.  I'm excited to start lifting again.

So, I just need to keep my pain under control, make it through this week of treatments then start focusing on healing.  Really excited about being done.

Day 36, 25/33 days of Radiation

It's been over a week since my last update and it's been a pretty rough time at that.  I'll try and recap what's happened to get caught up.

My primary care doctors office got the gravity feed bags approved without another office visit.  I got delivery of the bags around Jan. 26th.  I used them the day prior to my chemo and up through the following Monday but ran into some problems with them.  I think I might have over filled my stomach from using them which caused some bloating feeling along with what felt like heartburn/acid reflux.  This caused some incredible discomfort.

Actually I'm not sure if I did actually overfill my stomach or if my feeding tube got displaced or a combination thereof.  This discomfort was so bad I went to the hospital for fear I had a blockage in my bowels somewhere.  After about six hours there the X-ray's showed no blockage.  What they found was my g-tube balloon had descended to my duodenum.  Unfortunately they didn't have anyone qualified there to reposition it.  They said I had to go to another hospital to have it repositioned.  At that point I was pretty exhausted so I just decided to go home and wait to see what the next day would bring.

That night I thought about my situation.  Several things changed which may have contributed to this happening.  One, I switched to gravity bags.  Two, I was trying to stay on top of my six cans of formula and 64-96 ounces of water per day per my chemo instructions.  Three, I lost one of the three buttons securing my stomach to my abdomen.  In anticipation of the other ones following suit I stopped securing the tube to my skin to allow it slack for when the other ones fell off.  This may have been the cause of the balloon slipping into my duodenum.  Taking these things into consideration I decided to go back to the way I was doing things since that was working for me up until this point.

So, I pulled the g-tube out from my stomach up to the markers on the tube indicating the distance to the balloon and resecured it to my skin as I had done up until things went wrong.  The following day, Wednesday, I did a feeding in the morning using the syringes and felt fine.  Then I went to my radiation appointment.  On my way to my appointment I informed my wife about my plans to return to my routine that was working to see how I felt before making another trip to the hospital.

She wasn't pleased with this and wanted some insurance that my g-tube was in the correct position.  To give her piece-of-mind I went to the hospital where I had it inserted so they could check it.  They checked it and sure enough it was in the correct position and told us it was fine.

I went back to administering my formula via syringes since it's a lot faster.  The bags, although easier and less messy, just take too long.  A two can feeding with the gravity bags take about an hour and a half and the syringes only take a half hour.  I do use the gravity bags for water since that will run through the bag a lot faster and due to the volume is more convenient.

That Monday, Jan. 30th, due to my extreme discomfort and exhaustion I started my medical leave from work.  I was really hoping to work through but with all the complications, fatique and increased pain in my mouth it's getting harder to perform my normal job functions.  My goal is to return to work Feb. 27th, but we'll see.

Oh, one final thing.  I found out I only have 33 treatments instead of 35.  So I'll be finished with my radiation treatments 4 days earlier.  It doesn't seem like much but I'm happy to shave a few days off.  I'm eager to start the healing process.

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.

Day 10, 8/35 days of Radiation

Starting to feel more like normal today.  I felt less nauseous.  Big plus!  It was still there but I didn't need to take any medication and I was able to eat pretty well, though nowhere near normal.  Certain things still made me feel like I wanted to hurl though.

Speaking of medication, I happen to read the script info on the Ativan that I was prescribed yesterday for nausea and the first line reads, "Taking [Ativan] with opioid medications such as codine or hydrocodone (which I also have) may increase your risk of very serious side effects, including death."  Wow! Glad I read that!  That's one of the reasons I don't like taking prescription medications; the side effects are often more profound than the benefits especially when used with other medications.  Lesson learned to read the prescription info on everything.  So, I'll probably be staying away from that, especially when things get worse and I need to be on the pain meds.

My weight stayed the same over the last couple days.  I'm now 149.2.  Hopefully with the Cisplatin leaving my system and my nausea diminishing I'll be able to eat a lot more.  I'm going to use the next couple weeks before my next chemo treatment to eat as much as possible to fortify myself for the next round.  Problem is that food tastes very different now.  Very bland for the most part, if they're not making me sick.  The only thing still enjoyable is fruit.  My wife bought some Kiwi's that are just saving me right now.  They're so perfectly ripe and tasty.  Strawberries are also incredibly good.  I feel like I'm learning what foods I like and dislike all over again.

The dryness in my mouth hasn't really changed much.  If anything it might have even gotten a little better.  However the tightness around my scar seems more prominent.  I think the metallic taste in my mouth is more pronounced as well.

My energy level today is feeling more back to normal.  I feel more like my old self again.  A lot more active and engaging.  So it seems like there's a cycle where I'll feel like shit for the five days following chemo and on the sixth start feeling better.  I'm glad I'm not going to feel like that the whole duration of treatment.  At least I'm hopeful I won't.

The ringing in my ears seemed less bothersome today.  I don't know if I just didn't notice it or if it actually decreased.  Right now it seems rather loud, so I guess I'll wait and see what it's like tomorrow.  I do want to mention that yesterday at work, when I was outside and cars would pass by I could hear their wheels make a noise I never really noticed before.  Like I could hear the spokes cutting through the air.  It was very odd, but that's the only thing I've noticed out of the ordinary with my hearing.

Last but definitely not least is sleep.  I slept very well last night  My god I needed that.  It may be the reason today was so positive.  So, without further ado, I'm off to bed looking forward to yet another good nights rest.  Onward and upward!

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.