Angry and Frustrated

I finally got my MRI done last night and they gave me a CD right away to take with me.  When I got home I opened it up and began looking at the images.  Of course, being a lay person, I couldn't make out what to look for.  So, I Googled it.

While reading posts on how to find tumors in MRI images I came across a YouTube video of a woman, Catherine Elliot, who went through a cancer ordeal similar to what I'm beginning to going through now.  It showed her scars, talked about her procedures and some of the side effects.  Pretty inspiring how she handled it.

I was curious to see how she was doing so I immediately checked the comments to see if she was still actively commenting, being that she began her ordeal in 2012.  That was my mistake, because in the comments I came across women who said they had lost their husband to oral cancer within months after being diagnosed.  That hit me like a punch to the stomach and quite frankly freaked me out.  A sense of urgency began to overwhelm me and the fact that I may only have a few months of life.

I tried to take a step back.  I don't know their situations or treatment.  Could be totally different.  I already had a full PET scan and they didn't find it anywhere else in my body and it was only in one lymph node.  So, OK, I've got that going.  But still I couldn't shake the feeling that I've been too passive in my pursuit of a cure.

Things that I woulda, shoulda, coulda done began to fill my thoughts.  A few of the things I'm pissed about or should have done differently are:

1.  My ENT didn't have an MRI done before my first surgery to confirm the primary site.  I should have told him I wanted this done before hand.  I'm pretty sure he said he was going to do this in my first meeting with him but he and I both dropped the ball.  I should have followed up and insisted this be done before hand.

2.  One thing that I'm disappointed in my ENT about is that he didn't personally check-in on me before and after surgery to go over the procedure and see how I was doing. I just assumed that any good doctor, out of common courtesy and concern for his patient, would do this.  I should have asked to meet with my ENT prior to surgery to go over what was going to be done.  I just expected this to happen as standard protocol, but it didn't.

I would have confirmed that he was going to have a pathologist onsite to confirm the squamous cells were in my Palatine tonsil and if they weren't to go ahead and biopsy my Lingual tonsil, like he said he would in one of our first meeting.  I don't know why he didn't do this, maybe something happened and the pathologist couldn't be there.  Or maybe he was just overconfident in his diagnosis that he decided not to do this which set me back weeks if not months.

I feel kind of trapped where I am.  Living in a rural area I feel like this is probably the best service I can expect.  I would have to drive over an hour or more in major metro traffic to get better care.  That would add a tremendous amount of additional stress on top of what I'm already experiencing.  I don't know.

I hand delivered the CD of my MRI scans to my oncologist today and sent my ENT a message letting him know that I had my MRI done yesterday, that I'm experiencing pain in my throat and asked when is the soonest I can get in.  I logged into the patient portal of the imaging lab.  The portal said I shouldn't expect results from the radiologist until Saturday, Nov. 19.  It said they won't be available to me until they've been sent to the ordering doctor.

Prior to surgery I felt a discomfort in my throat.  I didn't mention it because I expected it to go away after surgery.  Then when I felt it after surgery I just thought it was a result of the surgery.  Now, seven weeks after surgery it hasn't gotten any better.  In fact, it's gotten worse and more painful, especially over the last few days.

From what I saw on the MRI CD and what I'm feeling I think the tumor is in my lingual tonsil.  It looks like it measures 10 mm x 13 mm, but I could be totally mistaken.  For now I'm just, impatiently, waiting for answers.

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.

Second ENT Doctor

I met my second ENT doctor yesterday.  He seemed very practiced and confident.  Maybe too confident?  He gave me a positive prognosis.  He's pretty sure it's in my tonsils based on the CT scan.  He doesn't think the PET scan will provide more information except if it's spread to other organs.

He said there's two routes to go; a lot of radiation and chemotherapy or surgery and less radiation.  He recommended surgery because he's pretty sure of where it is.  If they didn't know where it is or can't find the tumor then the only option would be radiation and chemotherapy.

So he wants to go in and remove what he thinks is a tumor on my right tonsil, which corresponds to the side of neck where the swollen lymph nodes are.  That would go straight to pathology to confirm that's the cancer.  If it's confirmed then they remove my lymph nodes and the next day I go home.  Recovery from surgery is about 2 weeks then after that I do 2-3 months of radiation.

If it's not in the tonsil then he would feel around for it.  He said they have a 98% chance of finding it in surgery.  If they can't find it then they just end the surgery and I go the radiation/chemotherapy route.

He said the survival rate is on the plus side of 70% and if I survive this the chance of it coming back is rare.  I asked him if age is a factor in the survival rate and he told me not really.  He said a greater factor is how well your body deals with cancer and how aggressive the cancer is.

We talked about the cause and I asked him if he thought it was smoking/alcohol or HPV related.  I had an HPV test but haven't received the results back yet.  He said it's almost definitely caused by HPV and was sure the test results will come back positive.  He said typically the alcohol/smoking caused cancers don't manifest until you're older.

Regardless, he said no alcohol, including mouth wash would be a good idea.  I knew alcohol contributed to cancer but I didn't realize that just gargling with it and not drinking it did too.  He said 1-2 drinks a year would definitely not be a problem, 1-2 drinks a month would probably be OK, but more than that significantly increases your risk of cancer in the mouth and throat.  So, ya, I'm staying away from alcohol.  Maybe after I pull through this I'll have an occasional glass of wine, beer or scotch.

So, along with no more alcohol, I'm further hedging my bets and doing everything I can nutrition/diet wise to give my body the advantage and cancer the disadvantage.  A fight is not won by sitting back in an arm chair; it's won by getting up and fighting.