What a difference a week makes

April 29, 2011 – What a difference a week makes!

Yeah, I felt pretty good last Friday. It was nice.

I’d like to say I haven’t blogged for a few days because things were boring around here but that would be a lie. Between nausea, pain,  fever, a rash, now some reflux, thrush and all the meds to handle all that stuff it’s been a very busy 5 days. I’m better today but I wouldn’t say I’m ready for prime time. But 3 weeks of treatment are completed so I get to spend the weekend wondering if I should go ahead and get the feeding tube. Eating is horribly painful and unappealing even with pain meds. There are people who “live to eat” and people who “eat to live” and I’ve always been the latter. However I’m even more so now. Since one must have nourishment to exist so I’m counting calories (let’s see how many are there in a raisin?) to try to get to 2000 so I can shut down the food intake for the day. I’ll decide by Monday whether to get the tube or tough it out. Pain sucks.

I changed pain meds during the week and who knows if Oxycodone is the answer. It does work but I wonder if that’s what’s causing the rash – and fever – and reflux. Or is it the anti-Thrush meds or the anti-nausea meds or a combination of one or more of those.

14 of 35 Radiation treatments done – 40%!

Emotions:  You know it’s coming but you really can’t prepare so when all this hit my demeanor sunk. Each good day I was hoping for the next one to be good and I really haven’t had any totally good days since Friday. I’m quieter now. My wife says I don’t complain – well it hurts to complain! So now it’s just focusing on the moment; get that Ensure down; eat that pudding; mark off another day on the calendar. Keep moving forward. Take another nap. Charge (sound of lame trumpet)!!!

Return to Sender

April 26, 2011 – Return To Sender

Gee I was so proud of myself too. I got up early after a bit of a restless night and my throat was killing me. So I took the largest dose (one full pill) of my Hydrocodone/Acetaminophen blend washed down with Ensure and in 20 minutes I was experiencing about 80% less pain. So I ate my oatmeal and read the paper knowing I consumed about 500+ calories on the way for maybe 2000 for the day.  Lookin’ good!! 

Well, about an hour after I took the meds, I started experiencing that tell-tale sweating you normally associate with nausea. (motion sickness really does that to you). Uh oh…go lie down dude and take an anti-nausea pill. Did both. It didn’t help. I was forced to experience reverse peristalsis for the first time in many, many years. Not only that but I now had no ride to RadDoc since my wife left 20 minutes earlier so off I went. Took a small trash can with me and was forced into two more experiences before I arrived. Based on that I’m kind of glad I was alone. The nurses at RadDoc took care of me and I completed day 11 of radiation. Joanne showed up to rescue me and took me to ChemoDoc after my visit with the doctor.

RadDoc (Dr. Neal) checked out my mouth and said: “a bit of thrush.” Great.  Oral Candida – a freakin’ yeast infection. It seems that the mouth has similar attributes usually associated with the more common site for yeast infections (which does explain some other things) and once the PH of the mouth is messed up, you are vulnerable. Now I’m on yet another drug to try to get rid of it. What a ride.

Off to ChemDoc  (I was now late but it didn’t matter) and they loaded my up with more anti-nausea drugs and that wonderful steroid I’m growing fond of. Today I slept through most of the 3-hour treatment.  I’d like to sleep until about August – wake me up when you’re done fixing me!! I wish it worked that way.

Late afternoon – Feeling better (steroids!!)

Vacation's over

April 25, 2011 – Vacation’s Over

I wasn’t going to write today but much has changed since Saturday. I’m definitely getting into a new phase. It wasn’t long after my blog entry that my mouth and throat became much more painful. It’s mostly in the back of my throat and side of my tongue near the back molars but it’s affected my ability to chew and eat to some extent.  It’s amazing how much you use your tongue while chewing. I finally gave in and took a pain pill last night and again this morning. I ate fine after that but the meds make you drowsy.  I also know these pain meds can alter your, um, digestion and change your body from a short term transfer station into a long term storage facility so appropriate meds need to be added to the mix to mitigate that issue. How much is the question. I guess I’ll learn.

When you go to a doctor for pain they ask about your level of pain from 1 – 10. Pain is certainly subjective so I Googled pain ratings for a guide. I assumed correctly that 0 is none, one to three is mild to noticeable but 4 through 6 were life changing and number 10 is what I’m calling “please kill me” pain. The one that got my attention was a definition of number nine: "pain so intense you cannot tolerate it and demand pain killers or surgery, no matter what the side effects or risk. If this doesn't work, suicide is frequent since there is no more joy in life whatsoever. Comparable to throat cancer."

Really!! Gee thanks.

Two Week Summary

April 23, 2011 – Two Week Summary

Well I’ve completed 2 weeks of treatment (nine Rads and two Chemos). I played 18 holes of golf yesterday and today and then last night played the first set with my band – just guitar, no vocals. I could have played the entire gig, with vocals but I just didn’t know I would feel that strong. What I think I’m saying is that I could have lived pretty normally for the past two weeks if I had chosen to.  My energy level has been good and I’ve been feeling ok overall. Instead I set everything aside to concentrate on my treatment. I’m not saying that was the wrong thing to do but I’d advise anyone who is going into treatment with this to schedule cancer treatments around your life instead of scheduling your life around cancer treatments. At minimum, build in some flexibility about it while your general health is pretty good.  Of course all this will likely change in the near future.

So what’s going on with me? My wife has been stuffing me with food for the past two weeks (do I even like Ensure in a milk shake?) and I have gained a few pounds. The inside of my mouth feels like it’s in a war zone with a lot of tenderness in my cheeks, gums and tongue. My mouth is very dry (just about constant hydration needed) and my taste buds have apparently left for a better deal; food doesn’t taste very good at all. My throat has been slightly sore a few times but nothing terrible yet. I’m doing swallowing exercises and so far I’m ok there. I’m starting to get more fatigued (2 hour nap yesterday – one coming up today when I’m done with this). Also with all the water I’ve been drinking I’ve been getting up for the bathroom a couple times per night. I’m trying to adjust my intake so I keep my mouth wet but don’t swallow much of it. I wake up with severe dry mouth so I keep water by my bedside. I have been sleeping ok and I hope that continues. Week three begins Monday and the adventure continues.

"Celebrate the Routine"

April 20, 2011 – “Celebrate the Routine”

I don’t know if I actually coined that phrase – I doubt it - but I used to say it during my working years when I found holidays and other time off disruptive. I had trouble getting back to my routine and often was happy when the triad of Thanksgiving, Christmas and New Years was over so I could get back into my routine.  On the other hand I always liked vacations because the first few days away always felt longer than they actually were. As the vacation week went on, time speeded up again because…yep, it became routine. Routines make time go faster.

So that being said, I’m settling in on a routine for this cancer business. Each day I arise at 6:30, shower and prepare for my 8 AM radiation treatment. I’m usually home by nine and I do my mouth/jaw/swallowing exercises, eat breakfast, drink Ensure, and take, um, elimination aids. Each day my focus is or will be on 5 things: pain control, nausea control and prevention of the delicate subject of waste management. The other two are food (weight maintenance) and hydration. Since I’m only in my second week of treatment I’ve had minimal problems in the first 3 areas (chemo related) and none in the last two. I’m supposed to keep a log for all this and I started the first week. But I’ve dropped it for now since not much is going on worth reporting.  I’m hoping that this “routine” routine will help the time pass faster over the next couple months. My history says it should.

April 19, 2011 - 20% Done!!

April 19, 2011 – 20% Done!!

I’m kind of a numbers guy and it dawned on me today that I’ve now completed 20% of my radiation treatments (7 of 35). Since it barely seems like I got started yet (still feeling relatively ok) it feels good to be that far along.  My second round of chemo was right after RadDoc and I guess I’m something like 28.57% done with chemo now too. (yeah, I did that in my head). I now have a slight sore throat but it’s not bad enough to take any meds for it. It’s still just a minor annoyance. Appetite is still ok, I can taste food but it’s a little different. I have more dry mouth. I’m drinking water all the time. I need to just “swish” at night because I keep waking up during the night to pee.

Chemo Factory – I had chemo in a different location today and there were perhaps 20 chairs in this room with many of them filled. Some people looked pretty chipper like me and some….well some poor guy tossed his cookies after I was about halfway through my treatment. I guess the anti-nausea drugs didn’t work on him. He was there when I arrived and still there when I left. He looked miserable. I looked around wondering what was wrong with everyone. Was their prognosis as good as mine? Were they grasping at straws trying to save themselves against the odds?  What were they thinking about? Chemo kind of drained me yet I’m scheduled for nine holes of golf this evening. I keep plugging away. I think I’ll take a nap.

Cancer is like a private club. Many people are in it but you have to know someone to join. In this case it’s an oncology doctor. With friends like these………..

End of Week One

April 15, 2011 – End of week one

As I was told, this week was no big deal. I survived 5 days of radiation with minimal effects (some fatigue) and my first day of chemo (Tuesday) with “some” side effects but I otherwise feel just fine. Chemo reactions:  a bit of insomnia the night of (I felt like I was trying to sleep after too much caffeine), a dryer mouth, an “odd” feeling overall, a hint of constipation and my first hint of nausea Thursday night (2.5 days later). I played golf the night of chemo (to great failure) and also the next morning (much better). I felt some fatigue each day and napped Thursday afternoon. My wife is feeding me fattening food and complaining she’s going to get fat now too. How is that my fault?? Oh yeah, it’s always the husband’s fault. With all this extra fatty food I’m eating I’ll probably have a heart attack before the cancer can kill me! I’ve gained a few pounds. My doctors like that – which tells me much of what I need to know about the upcoming weeks (the sound of ominous drums……).

First Chemo Day

April 12, 2011 – First Chemo Day
I had radiation and chemo today and it got a bit boring after the 3^rd hour of chemo. But other than feeling a bit strange and slightly tired, I was ok. They have wireless there so I was able to use my laptop and maintain my porn habit (just don’t tell anybody). They gave me fluids, nausea meds, steroids and other stuff before the chemo. So far no nausea at all. Maybe my body hasn’t yet figured out it is being invaded. My salivary glands seem to know something is up as they appear to be heading for the exits already. I just hope they took some cancer cells out the door with them. Taste is still intact though. First sign of pain (mild so far) as I noticed it on the left side below my ear when I chewed something. Nothing in the throat yet.

Emotions – Still feeling damned good thank you. Not much anxiety about what’s coming up and I guess it’s because I’m prepared – as well as I can be.  Joanne is still suffering more than I am at this point. More wine Joanne, more wine.

Day One - They should all be this good

Day one at the RadDoc was a piece of cake. It will likely be the easiest day of treatment as I start with ChemoDoc tomorrow at 9 - after RadDoc at 7:45. Should be a long day. My wife took a few photos which are included here. This upset her way more than me. My Hanibal Lecter mask leaves "mesh marks" on my face for about 20 minutes afterward. The least of my worries.

Sunday morning Reiki

April 10, 2011 – Sunday Reiki

I'm generally an empiricist. I need proof before I'll buy into anything. But now I have cancer and I've had offers for spiritual healing so I've decided to add to my "science based" treatments. I would never eschew medical care for the unproven faith based healing offered by non-medical providers. However, I do know we have a spiritual side and I also know this kind of attention to my well-being can do no harm and very well might do some good. So I’ve now had two hour long sessions with professional Reiki providers and a massage therapist. I feel well prepared for my several months of medical care. Tomorrow it begins.

Swallow, Swallow, Swallow

April 7, 2011 – Swallow, Swallow, Swallow!

I wasn’t planning on posting today. I had a simple appointment to assess my swallowing as a base line so they can compare how I do after treatment. I had the same test 6 months ago and that test also showed I have some difficulties. Bottom line though is I have a chance of having problems swallowing in later years because of the long term effects of radiation treatment. You’re not done when you’re done. So I have 2 instruction sheets of exercises to do to keep my swallowing muscles strong. I’ll call them Kegel exercises for the mouth. This finding also reinforces the importance of my trying to swallow my way through the treatment no matter how difficult it is. I have read of people who were totally dependent on a feeding tube during treatment having big problems afterward. So if you’re an oral cancer patient reading this, I hope this information is helpful. 

Meanwhile, radiation starts Monday at 11:30 and chemo on Tuesday at 9 AM.

Diagnosis and Battle Plan

April 5, 2011 – Final Diagnosis Day

Today we met with RadDoc and discussed everything that was going to happen. My PET scan turned out good in that I “only” have cancer on my tongue and a left lymph node. The size of the lymph node moved me from stage 3 to Stage 4-A. That sounds ominous for most cancers but not for head and neck cancer. I heard about all the rare side effects including paralysis (good God!!), thyroid issues after a few years, hearing problems, jaw problems and the “normal” fun things (dry mouth, mucus issues, pain, nausea, swallowing problems etc.). It still looks promising for me.

I start on Monday, April 11^th with my first radiation treatment (after a practice session) and chemo will start someday soon after that. I’m going to be part of a clinical study that means I’ll get less radiation on the non-cancer side (right side). That should help me not lose as much function (taste, salivary glands, swallowing). I’m actually the first member of this study and I otherwise get all the same treatment for the rest of me.

My challenges:

1.      1. Stay fed and hydrated (no feeding tube as of now; I need to make myself swallow through the pain) and try not to lose more than 10% of my weight (14 pounds).

2.      2. Take enough pain meds to allow the above

3.      3. Make sure the anti-nausea drugs are working.

4.      4. Take care of my teeth and mouth on a daily basis.

5.      5. Handle the massive mucus problem I’m going to encounter.

6.    6. Take necessary stuff to assure continued regularity (embarrassing topic but part of taking lots of pain meds).

7.      7. Stay positive throughout (get through each day; look toward a cancer free future).

If I can handle the above I’ll get through it.

Emotions – For some reason I feel completely normal. I’m now used to having cancer (not sure how that happened) but I think the main thing for me is having complete information as to what to expect. I always feel better when I’m well informed. I think the learning process helps me cope. I have my sense of humor intact (tonight I won money at golf and called it “chemo money”). Joanne is also feeling better so we’re ready for the long road ahead. I WILL prevail!!!

PET Scan Day

April 1, 2011 – PET Scan day - Did you ever have to lie on a table and put your arms over your head for 25 minutes while not moving? Well, that was part of my PET scan today. It’s a long process. My shoulders were aching. They inject you with some glucose that’s been processed at a Japanese nuclear power plant and then you have to sit for an hour while the radiation finds all the cancer places to hide in. Then they take you into the “donut room” where they torture you with your arms above your head for 25 minutes (I tried to count to 60, 25 times hoping it would make the time go faster – it didn’t). Prior to that they put on my Hannibal Lecter mask and did about 15 minutes of PETting while I was completely pinned to the table. I think they learned this from Dick Cheney’s “enhanced interrogation techniques.” I was ready to talk and I didn’t even do anything.

Dinner out tonight as I start to enjoy my last 10 days before they start to poison and burn me. Back to the RadDoc on Tuesday for final planning.