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. :\