I ate a cheeseburger!!!

I've been craving a cheeseburger for the past several days or at least some type of meat.  I don't think I've eaten meat in weeks.  Things didn't seem to be burning quite as bad today, so when Jake said he was going to pick up McDonalds for dinner, I asked him if he thought I could handle a cheeseburger.  We decided it was worth a shot.  I took an extra percoset and managed to eat an entire cheeseburger with only a little bit of pain!  It took me 40 minutes and two full glasses of water, but I did it...a whole cheeseburger!  You wouldn't think someone could be so happy eating McDonalds.

I am in such a great mood now and hopeful for days to come.  I definitely need to continue to avoid the types of things that would aggravate mouth sores, like spicy or acidic food, but I have hopes of eating solid food....even if I do have to do a lot of rinsing with water.

Things aren't 100% yet, though.  My taste buds are still pretty much shot.  I could only barely taste the food and was mainly enjoying the cheeseburger by its smell.  I should expect this to continue for the next couple years.  I also wouldn't be surprised if when tastes started to come back they were metal-like for a while.  That is almost inevitable.  It's a bit depressing knowing that I won't be able to really appreciate food for so long.  I am just thankful that I may start being able to eat again.  I'm just that much closer to being normal again.

I miss eating

I was so excited earlier in the week.  I felt like I was making such vast improvements every day.  I seem to have reached a plateau now.  My mouth sores persist and my saliva remains thick.  All of this made the days at Disney get more and more depressing.  It was so hard watching Jake enjoy all the fun amusement park food.  What I wouldn't have given to have a corn dog or funnel cake or cotton candy.  It just hurts so much to put anything in my mouth.  Even the Ensure continues to burn.  I force myself to chug down ensure or melted shakes/floats.  I take a few sips, then have to rinse it with water.  It still feels like my mouth is on fire.

I miss eating food so much.  I am somewhat of a foodie and not being able to try out new recipes or try new food at restaurants is so aggravating.  I haven't had real food in months.  I have no idea when my tongue will stop burning, but it better be any day now.  I just don't know how much longer I can deal with this.

I guess on the positive side, otherwise I'm feeling pretty good.  I'm able to work again which is a nice mental distraction from all of this.  I'm able to go the day without spitting too much provided I have my water bottle close by.  I get several hours of sleep before waking up needing to spit.  My neck is looking a ton better.  I should be thankful I've done as well as I have.

I just really hope these mouth sores go away soon.  It seems it shouldn't be like this for more than another two weeks, but two weeks is still a really long time. :\

Day 1 at Disney

I just wanted to put a quick post today and let everyone know we made it safely to Florida and had a good day today at the Animal Kingdom.

Yesterday went well until we got to the hotel.  I managed to make it through the day without too much spitting.  When we got to our hotel room I got sick and just needed to lay down.  Jake wanted to eat dinner but all the restaurants and room service was closed for the night.  Then we found out our reservations were messed up and had us checking out a day early.  It was really a nightmare.

Luckily by the morning I was feeling a ton better and we managed to get a room for our last day here.  I made it at the park today without too many complications.  There were moments of having to spit in the grass at the park, but I was able to ride a few things without getting nauseated.  We took it easy and it was nice to be out in the sun and having fun.

My tongue is healing nicely, but there are still open sores that burn when food touches it.  I managed a root beer float in the park and then for dinner tonight the family ordered a bunch of pizza.  I actually got down about two bites after numbing my mouth with lidocaine and then rinsing it with water.  It was nice to have something in my mouth that wasn't ensure or ice cream.  I'm hoping the sores continue to heal so I can branch out even more from all the ensure.

Here's to continuing to improve exponentially!

You just beat cancer, what are you going to do now?

I'M GOING TO DISNEYWORLD!

That's right folks.  Today Jake and I are leaving to Florida for a fun-filled time of relaxation and Disney characters.  This isn't completely out of the blue.  This trip has actually been in the works for almost a year.  Jake's family is having a reunion of sorts and it was scheduled for this weekend.  This weekend was blocked off on my calendar for so long...looming there at the end of treatment.   I kept wondering if I'd be well enough to make it.  We had plane tickets, but that was it.  Only a week ago did I finally call the doggie hotel, get a rental car, get tix to DisneyWorld (at a slight corporate discount - the company I work for just opened a ride there where you do math on a roller coaster, it's called 'the Sum of all Thrills' - how dorky! hehe).  Jake's mom got us a room as part of the block rooms for the reunion quite a while ago, so we were all set there as well.

I am really looking forward to a real vacation.  I'm still worried how a lot of my lingering side effects will play into all of this.  I woke up this morning, realizing my mucus, while still thick, was quite a bit thinner than before, to the point where I could swallow it.  It still hurts to swallow, but with cold water it's not too bad.  This will be a much better alternative than have a spit cup on the airplane.  I'm hoping this also means that I won't feel too bad leaving my suction machine at home.  A nurse had suggested getting a doctors note to take the machine to Florida with me.  It's only like 5-10 lbs.....but still, it just seemed like it would be a pain. 

The thing I'm most worried about is eating though.  I haven't eaten a thing but ensure and melted ice cream for the past week or two.  I plan to bring some ensure in my checked luggage, but that will only get me so far.  With walking around themeparks, I'm going to need more nutrition than my typical 1000 calories per day or so I've been consuming lately.  Even if I make sure to down two medium McDonalds shakes a day (~1500 calories), that's not really nutritious.  I am pleasantly surprised at how vast the improvements are from day to day.  My hope is that by a few days into the trip I'll be able to eat soft foods again.  I'm very sad by the fact that the reunion is having a special dinner and brunch that I won't be able to participate in.  I'm also sad by the fact that I won't get to eat my way around Epcot.  That is one of my favorite things about DisneyWorld, trying all the fabulous foods from around the world.  Maybe I'll just have to settle for a world review of ice cream. :\

I guess the last concern is my neck.  It is still pretty rough.  I was told to wear a "sombrero" by the RO (He thought that was just hilarious, too), but all kidding aside I should wear a large brim hat, to avoid sunlight on the scar, yet not irritating it with scarves.  I don't know, though.  I'd much rather wear a light scarf than a wide brim hat.  A scarf will stay on you while you flipped upside down in a roller coaster.  I'm not too sure about a hat.  I guess I'll bring both and see what happens.  Regardless, there will be lots of sunscreen.

Wow. This has been a long post.  I guess I am just very excited and anxious about the trip.  Regardless, I am looking forward to a very much deserved vacation. :) 

Back to work already

Well, I may have done it earlier than I should...but I went back to work today.  I really felt pretty great most of the day.  The main problem continues to be that my saliva is super thick and mucus-like.  I have a hard time swallowing and choke on the mucus.  So, I was forced to have a spit cup or Kleenex at my side all day.  I kept the spitting down to a minimum and the people around me who had to hear me spitting seemed to understand.  It'll be a while before things are back to normal so it seems a shame to stay at home for just the one side effect.  I don't know.  Maybe I'm just crazy and/or a workaholic.

The day went well.  People were really happy I was back.  The one program I work on was covered really well while I was out and so I barely had to do a thing with it today.  The other program had dozens and dozens of things left for me to take care of, so I was a bit disappointed there.  Some things were done by my back-up, but not a lot.

My day-to-day boss remembered that I had said when I come back I might be low on saliva and need water at my side 24/7, so she worked to get me a special water bottle that I could keep in the closed factory area.  One of my coworkers heard about the saliva thing and brought me these special super absorbent wipes that could be used instead of like 8 Kleenex.  Another coworker offered me her too small clothes since I am now swimming in my work clothes (I ended up netting a loss of 15 lbs).  I really feel like people were looking out for me and feel very loved.  I really missed my coworkers.

I also had my year review today with my section lead and found out that I was ranked in the topmost percentage of my coworkers.  I had one minor negative and a billion positive things said about me.  It looks likely that I'll be getting a promotion when those are announced in a month or two.  I'm very excited!

All-in-all, it was a very good day.  I hope my mucus issue gets even better so I can have an even better day tomorrow. :)

You can call me NED

It's good to be done with radiation treatment!  I almost cried during treatment I was so happy to be done.  The doctor says by the end of next week I will feel like a whole new person.  I am looking forward to it!

 

The radiation techs let me take home my mask.  Hera (our min-pin) is horribly scared of it.  Ares (our corgi) felt he had to sniff it out.

So does this mean I can finally consider myself in remission?  Have I been in remission since surgery?  Do I get to finally start my 5-year clock to being considered cancer-free.  Has it already been clicking?  I still might be in treatment, though.  We still don't know about the mop-up chemo.  Today I've adopted a new label, NED - No evidence of disease.  This is a legitimate way of classifying yourself in the cancer world and that's how I  will identify myself for now.  I may or may not be in remission.  I may or may not be in treatment.  I may have to deal with physical and mental issues the rest of my life because of this cancer.  That doesn't matter now.  The important thing is that right now there is no evidence of the disease and that's the best we can hope for.

Flowers Flowers February

Well, Happy Valentine's Day to all of you out there!  Jake and I decided a week or two ago that we would postpone Valentine's Day this year.  What's the point of going out to a fancy restaurant if I'd just order poached eggs, ice cream, and water?  We also figured the flowers would be cheaper....  Well, Jake is too great of a husband and had already ordered my Valentine's Day flowers weeks ago.  So yesterday I was surprised with the most beautiful arrangement.  (For those of you at my wedding, note the similarities to our wedding bouquet.  What a great guy!)

The flowers are now flanked by the other sets of flowers received within the past week or so.  Some beautiful lilies from Allison:

And a spring arrangement from my in-laws:

Our house is smelling like a greenhouse!  I guess it's just more encouragement knowing that the end is in sight.  I've also been overwhelmed with many great cards lately.  Keep it up!  I love the little bits of encouragement.

That being said, Jake and I still are thinking of leaving town next weekend....so no new flowers for a while, guys.  Hehehe.  Thanks. :)

1 more to go and feeling pretty good

Well, my vision isn't so blurry anymore, so it's time for a decent post.  I woke up this morning feeling relatively well.  At this rate, I'll be back to work mid next-week!  (I promise I won't go back until I'm ready, though.)  I have one little treatment left on Monday and then I'm done (I hope....I still don't know for sure about that whole mop-up chemo bit).

I feel bad, though, because Jake is pretty under-the-weather.  I think as he's adjusting his meds it's causing all sorts of bad side effects.  Hopefully he gets those straightened up and can get a decent night of sleep.  I'm getting used to 2-4 hour segment style of sleeping....it's really not too bad.  In Jake's case it's 2-4 hours of sleep at all would seem like a blessing.

I'd say the worst thing going on now is my neck burn.  It's all blistered and cracked and gross.  It doesn't feel that bad though, just stiff.  I mean....I guess I still can't really eat, but that's sorta become the normal.  I'm used to waking up, forcing down an ensure, forcing down another one later in the day, etc.  I don't want to jinx it, but it doesn't seem to be burning as bad lately, so that's good.

I suppose that's all for today.  One more treatment to go and I'm feeling pretty optimistic.

Another delay in treatment

Today I sat in the treatment waiting room for over an hour waiting for the machine to be rebooted.  It never got up and working, and so I wasn't able to get treatment today.  It should be fixed for tomorrow, but this pushes me back until Monday to be done.  I am very frustrated and I just want to finish.  The vision is still blury or else I'd write more.  Good night.

Three, it's a magic number

Well... they gave me treatment today.  My RO told me to stop being so stoic and tell him if I'm in any pain and we would stop again.

I feel ok enough for now, so we will try to push through to the end.

My vision is blury due to the anti-nausea meds, so this is all I will post today and maybe for a few days.

Thanks everyone for the support. <3

STILL 4 treatments to go :(

I showed up for radiation today and the radiation techs looked concerned about my radiation burns on my neck.  They had Dr. Nguyen take a look.  Dr. Nguyen wanted to postpone treatment for a few days.  We compromised on checking it out again tomorrow.  I guess the problem is that my neck started bleeding.  When that happens, the radiation can cause the cuts to rip open during treatment.  The only way to properly heal them is to give them time.  I'm going to put a ton of anointment on my burns and then hopefully not have all the bloody marks tomorrow.  I just want to finish!  I'm having a hard time keeping it together.

Here's a glimpse at my neck.  It's not THAT bad, is it? :(

Getting my last (maybe) dose of chemo

Right now I'm sitting in my chemo chair, snuggled up in a beautiful quilt made and sent to me by one of my favorite high school teachers (it continues to astound me at the people from my past who continue to contact me and send me gifts and well-wishes during this time), forcing myself to eat some yogurt and drink lots of water, while watching the last bag of chemo drip into my port.

The days go by like roller coasters.  I wake up in the morning feeling absolutely horrible.  I take some pain meds and drink a ton of water, by an hour later or so, I start to really feel fantastic.  An hour or so later I begin to feel icky, maybe even somewhat quesy (This is probably b/c I'm not eating when I take the pain meds.  I have to wait for the meds to kick in before I feel ok enough to eat and make it so food only burns at a 4 or 5, not a 6 or 7).  Then I start to feel local pain in some of the mouth sores on my tongue.  I take some lidocaine on a q-tip, suck on that for a bit, and feel better for another 15 minutes or so.  I start to feel bad again.  I begin to notice the skin falling of my neck and places on it start to bleed.  I start coughing.  The mucus in my throat becomes overwhelming.  I use my suction machine and/or drink lots of water and it starts to get better.  3 hours are up, so I take more pain meds.  Within the next hour, I start to feel really fantastic and the cycle starts again.  Right now I'm at the skin falling off / neck bleeding part.  Not fun.... but I'm looking forward to the pain meds in 1/2 hour.

I did drive myself to treatment today, but I timed it so that I was driving during that "feeling fantastic" part.  I don't think my timing will work out as well for the rest of the appointments.  I'm hoping I do ok and if not, Jake will just have to figure out a way to get both cars home. :\

Lastly, to address the "(maybe)" from the title.....  I was told at my last visit with my MO that this might not be the last of the chemo treatments.  We may still opt for mop-up checmo.  If we do this, it won't start for a month or two after this round of treatment is done and it would be 5 days straight, once a month, for three months.  Right now it is up in the air.  We will be discussing whether or not I should do it at my March 8th appointment.  I'm ever-so-slightly leaning against it, but I will wait to hear what the MO has to say and what studies support this type of treatment.  I've seen other oral cancer patients get this type of chemo instead of my type, but never both.  We'll just have to wait and see.

My newest prescription sucks

Literally.

On Friday I asked if I could get a prescription for a home suction machine.  Since my appointments are so late in the day, by the time I left, most medical supply stores were closed until Monday.  I called this one store and they said it wasn't a problem and they sent out a guy to bring the thing to my house and set it up.  It was awesome.  I have no idea how much this will cost, but I'm hoping not much.  They submit the form to my insurance and I pay the difference.

This machine is great at getting all that extra mucus out of my throat.  I'm still having a lot of trouble with that.  I notice myself falling asleep and waking myself up with the snoring-like noises I start making.  It's actually a gurgling of mucus in my throat as the air goes past it.  ewwwwwwwwww.

I'm tired and have a lot more mouth sores, but the pain meds work well and I'm trying to take lots of naps.

It's a little lonely around here.  My mom left this morning.  It was great having her around to drive me to appointments and really clean the house.   I appreciated the help so much.  My mother-in-law is coming this next week to help out with my final week of treatment.

That light is continuing to get brighter.  Only 4 more treatments to go! :)

Only a handful to go...

I'm down to only 5 more radiation treatments!  The light at the end of the tunnel is getting brighter.  I only have another 2 Ethyol (amifostine) shots.  With chemo on Monday, I won't get shots Tuesday - Thursday for fear of nausea.

I'm still feeling icky here and there, but my MO upped my dosage of pain meds, so I've been having several "feeling good" moments.  I actually pretty good most of the time, until I try to swallow or eat something.  I'm glad it's Friday (my last Friday....woohoo), as I now have 2 days to hopefully get rid of some of the swallowing pain due to mucus build-up.

I know many of you have contacted me telling me not to plan to go back to work on 2/15.... but here's the thing....  I don't want to jinx myself, but I have plans to go with Jake to a family reunion of sorts for 2/19-2/24.  I don't think the short-term disability folks would be happy to know I was using my time off to go on vacation.  As long as I don't feel too fatigued, I think I can handle 4 days of work, then take my vacation.  Those short-term disability folks are tricky.  They asked me weeks ago when I thought I could come back to work.  I told them I had absolutely no idea, but my treatment would be done on the 11th and so the very earliest possible might be the 15th.  Now if I want to extend my STD beyond the 15th I have to fill out all the paperwork again.  We'll just have to wait and see about everything.  Don't worry everyone, though.  I will not go back to work until I feel good enough to do so.

Not enough saliva, too much mucus

Last night I added another step to my before going to bed routine.  In previous nights I was waking up with almost no saliva in my mouth.  I am now using a spray for dry mouth, which seemed to let me sleep a little bit better.  Well...it was either that or the percocet or both.  Now my nightly routine is take meds, magic mouthwash, brush my teeth, have a fit from the stinging of the toothpaste, drink a ton of water, coat my mouth with gelclair (mouth sore soothing gel), spray to prevent dry mouth, use lidocaine to numb any remaining mouth pain, fill the humidifier with water, and finally hop into bed.  Then I wake up multiple times during the night and get to repeat whichever of those steps I think will help the most.  It's all just getting very tiring.

This morning I was taking a nap and woke up short of breath.  I was having trouble breathing because my throat was so full of mucus.  I tried coughing it up to no avail.  I eventually was able to help get rid of some by gargling with a salt water solution, then drinking a lot of water to try to rinse down the rest.  I'm going to talk to my nurse/doctor today to see if I can add taking mucinex to my medication regimen.  I worry about sleeping too much and waking up to another fit like this.

It's all so frustrating.  My throat is full of liquid, yet my mouth is so dry.  If I didn't have only 7 more treatments to go, I don't know if I could do this.  I can't imagine how bad most head & neck cancer patients have it.  My doctors and radiation techs continue to be amazed at how "good" I'm doing. :\

Pepsi Refresh Project

I just have a quick post today.  I don't know if you guys have seen the commercials (I'm stuck at home watching a lot of tv, so I've seen one or two already), but Pepsi is sponsoring a contest of sorts.  They are giving away millions of dollars every month to deserving ideas to improve communities and the planet, from arts to health to shelter to education.  Right now the oral cancer foundation is in the running for a $250,000 grant for a PSA/commercial campaign to raise awareness for oral cancer screenings.

They need votes, though, so go here and vote!  You can vote once per day, but only with one email address or facebook account (per the rules).  It's a simple thing you can do to promote oral cancer awareness without spending any money.

Thanks to anyone who participates and votes. :)

Not enough percocet in the house

This morning I decided to take the one percocet I had left over from pre-surgery.  I was able to eat/drink witth only increasing my pain to a 4 or so.  Before the drugs, it had gotten to the point where even the ensure and yogurt was knocking the pain up to a 6 or 7, so a 4 was a welcome surprise.  Also, I had gotten to a point where every 15 minutes I was sucking on a lidocaine dipped q-tip.  With the percocet, I didn't really need to do that.

So, when I saw my RO today I asked for a prescription for some percocet.  He gave it to me and I dropped it off at Walgreens.  Unfortunately, he forgot to write the strength on the prescription, so the pharmacy has to wait and fill it in the morning after they talk to him. :(

In the meantime, I thought maybe I could take Jake's percocets.  Unfortunately, he is almost out of them and even though he called his neurologist's nurse on Tuesday to say the percocet wasn't working well and could he get a prescription for something else, he hasn't heard back from her.  He called a different number today and they claimed he didn't leave a message until Thursday...which is a lie...and that he was just going to have to wait for the neurologist to call him back.

So we only have enough percocets in the house to last one person 2 days.  We're both in pain and both waiting on word from our doctors to fix/get new prescriptions.  I guess we'll just have to start rationing it out. :\