Meeting with Radiation Oncologist

I met with my radiation oncologist last Monday morning.  He introduced himself and, instead of me having to bring him up-to-speed, he told me everything he knew about my case.  I appreciated this.  It showed me that he has already taken the time to familiarize himself with me.  He told me to correct him if he gets anything wrong and feel free to add additional information along the way as I see fit.  I did.

After we went through everything up until now he confirmed that I'm on the right course doing the right thing.  Hearing that never gets old because fear and doubt creep into my thoughts on a daily basis.  It's one of the battles that I have to deal with.

He told me it's a bit early for him to do anything but I already knew that.  I let him know I realized that but that I just wanted to get the ball rolling so that after surgery I wouldn't have to worry about getting this duck sorted out.

I call all the things I need to do "ducks", as in ducks in a row or in a pond.  I like the pond metaphor better because sometimes they don't happen in a specific sequence.  Being open to that prevents anxiety and stress.

I also asked him, that I ask all the doctors I encounter, if he sees this cancer a lot and what he sees as the average prognosis.  He told me he does see this often and he said he's seen a 90%+ survivability rate.  That news made my eyes well up with tears of hope.

Life is funny.  I think we go about it not really thinking about death.  When in reality we can die any day, any moment.  Whether it be in a car crash, a random shooting or bombing (now-a-days), being struck by a meteor or a million other things that can spell our demise.  I know I did.

I mean, I occasionally did.  But I just pushed it out of my head, like I'm sure most people do.  Living blissfully in ignorance.  You can't very well go around thinking about death anyway.  That would make one pretty dreary.  Hell, I even planned on living well into old age, I still do, at least I hope I do but with a huge dose of reality that that may as well not happen.

Being courted by Death sure does put one on notice.  This death thing is real!  It can really happen, to me!

I was always one who looked to the future.  Waited for the weekend, saved for a rainy day, saved for retirement, waiting for a someday when I'll finally go here, or do this or say that.  Reminds me of a quote by a wise man...

"All his life has he looked away... to the future, to the horizon. Never his mind on where he was." - Yoda, Empire Strikes Back

Funny how I've heard those words many times but had never taken them to heart, until now.  Yes, they're words spoken by a fictional character from a movie, but that doesn't make them any less true.

Now, what this cancer has given me is a greater appreciation for the now.  An appreciation for today.  Who I am now.  Where I am now.  Who I'm with now.  What I'm doing now.  I am a now person living in today.

Anyway, back on track.

He did a brief exam of my neck and mouth which pretty much every doctor has done that I have seen.  He said that once the surgery is finished we'll know how to proceed.  He'll receive the reports from the surgeon and from that he'll know what and how to target my neck with radiation to kill any remaining cancer cells.

He went through the normal stuff like what I can expect, how long the treatment will take, and the side effects I may or may not experience.  One side effect that I'm concerned about is loss of saliva.

He said most people lose some saliva production, and some lose all.  Not only could I have the discomfort of a dry mouth but little or no saliva could cause severe dental hygiene problems.  It's manageable but I would have to keep a water bottle with me all the time and take sips constantly to wet my mouth.  Not the worst thing a person would have to live with.  I'm hoping for not a complete loss of my ability to salivate, but if I do I'll just have to deal with it and be thankful I'm alive.

That's about the extent of my visit.  Another positive doctors visit.  Those never get old either.  I'll take all those I can get.

Awaiting Surgery

I can't sleep right now because I'm feeling a little overwhelmed and second guessing myself.  Let me back up a little,

On the 6th I got my scheduled surgery date of October 3rd.  It was a bit far out for my preference but I was hoping something would open up sooner.  I've spoke with my Oncologist and the other ENT since then and they seemed like that was an acceptable time frame but the tone of the voices told me that just barely.  So I've been teetering between seeming like that's a reasonable time frame and that's not soon enough.

Now I'm just over two weeks out and I'm wondering if I'm not being insistent, pushy or a squeaky enough wheel.  I think I'm a pretty patience and trusting person but I feel like sometimes those traits can be detrimental.  I don't want this thing to get critical before my surgery and set me back further.  I want to be on top of this and make sure this is being handled by other people (ie - doctors) with the appropriate urgency.

Since last Friday evening my throat has been a bit sore.  I don't know if it's actually gotten worse or if I'm just more aware of it now since I know where the tumor is.  I have to say my lymph nodes seem smaller and the swelling around them seems slightly decreased.  They feel less prominent, are softer and are less bothersome.  I'm hoping all the diet and nutrition stuff I'm doing is having this effect.  I'm also hoping it's having a positive effect of shrinking my tumor.  Maybe the discomfort I'm feeling in my throat is the tumor shrinking.  I doubt it, seems counter intuitive, but I'm hopeful.

My first ENT called me after he got the results from the PET scan.  He confirmed what everyone else said, that the tumor is on the right side of my palatine tonsil.  I asked him if he could be more specific on how big "small" was because that's what he told me when I asked what size the tumor was.  He told me that it was about 1 cm in diameter to 2-3 mm in thickness.  So, to clarify I said it's like 2 to 3 dimes stacked on top of each other, he said, "Yes."

Ok, so I kept my cool but he could probably hear the incredulity in my voice.  I don't think a tumor the size of a couple stacked dimes in my throat "small".  That, to me seems like it would justify a "medium sized" classification.  When he originally told me it was small I was thinking the size of a BB or at most a pea.  I mean, when he scoped my throat it was barely a concern to him.  I don't think a dime sized tumor would have been a meh moment.  But what do I know, I'm not  a professionally trained ENT.  Maybe they see this shit everyday.

Alright, that was a bit of a rant, but I feel it was justifiably so.  My Oncologist told me a story of a woman who kept going to her doctor for sores in her mouth for about two years.  Her doctor never looked in her mouth and just kept prescribing her drugs.  When she finally came to him because it wasn't getting better he said she had a tumor the size of a mushroom on her tongue.  So, compared to a mushroom, yes, this is small.  I guess people do have much, much bigger tumors now that I think about it.  Still, I think a dime sized tumor is more significant than small, but maybe that's just because it's mine.

I do feel better for getting this out of me.  Maybe I'll call my second ENT tomorrow and at least let him know that my throat is noticeably sore now.  He'll either reassure me or maybe it will concern him, but I should hold any information back.  I think that would be the wise thing to do.

Finding the Right Doctors and Hospital, pt. 2

Early in the diagnosis phase I had gone to my dentist to see if an infection in my mouth was causing the swollen lymph nodes.  She saw me immediately, did x-rays and an exam, wrote me a letter explaining what she found along with her contact info to give to my doctor, and wouldn't take payment.  She ended the visit and asked me to let her know what they found.  Her caring and concern blew me away.  I mean, I've always liked her, but she took it to a whole new level this time.

So the other evening I was doing a search to see if I could find an email address to contact her with.  Of course some of the first results were those doctor bio sites with reviews.  I checked out a few of them to see if they had any email address listed.  I was shocked to see on the two sites I visited that all the reviews were negative!

I've been going to her for years now and she's always been great.  I've always been very particular about my dentist and have had several negative experiences in the past with other dentists.  However, she's always been professional, caring, communicative, and cost conscious.

The only thing I could see that people may not like about her is that she's not overtly "friendly", kinda like me.  She's straightforward and honest, which I personally value more.

Anyway, it got me thinking.  Maybe I shouldn't put so much weight on an Internet review and automatically write off a doctor because of a few negative reviews.  I should talk to the doctor and get a feel for him myself.  Could be that I really like him.