ENT Follow-up - Post MRI

Yesterday, Nov. 22nd, I had an office visit with my ENT, expedited by my wife.  Thank you, wife.  The radiologist that evaluated my MRI already reported that nothing was found.  What I really wanted to discuss was what I had found and for him and to address a bunch of questions I had from discussing my case with other doctors I had casual conversations with.

First and foremost I asked him about what I saw on my PET scan and how what I saw seemed to differ from what the radiologist reported.  First thing my ENT did was thank me for my due-diligence in being proactive in my case then asked how I became so good at reading PET scans.  My wife interjected that I'm and I.T. tech and am very meticulous.  That seemed to make some sort of sense to him and he commented on how he didn't think he's ever had a patient read a PET scan and send him images from it.  Ya, well, I'm highly motivated to get to the bottom of this.

Anyway, he went on to say that first of all these scans tend to be tricky to read and its sometimes hard to determine where "hotspots" actually present themselves in tissue and that it's difficult to determine a location based on a 2D screenshot.  I told him I understood that and that the image I sent him was just a reference shot so that he would know where in the images 3D to get a better look at what I was concerned about.  He then asked where I got those images and I told him off the CDs I had sent him.  He said that was interesting because, for whatever reason, all the images from the CDs hadn't been uploaded to their system, so they didn't have access to everything I did.  He did confirm that he did review the images before surgery but didn't realized that he was missing some of the data.  Now that he has all the CDs with all the images he's going to go back personally and review all the images to see if they reveal any new information.  I also asked him if he can have their radiology department review the images and he agreed that would be a good idea and would have that done.

Another question I had for him was whether, during my surgery, he felt around the other areas of my mouth for lumps or irregularities and if he scoped my throat looking for it further down.  He said that he did and nothing else presented itself.  He said that if my Palatine Tonsil hadn't been so hard, like it had a tumor inside, he would have taken out my lingual tonsil at the same time, but because it presented itself so strongly it seemed like it was definitely in there.  I, or my wife, also asked him if pathology had evaluated my tonsil tissue during surgery.  He said they did but what they can do during surgery is very limited.  He said to get a detailed report they have to send it out and they take very fine slices which take days to complete.  I asked him if he would have pathology re-examine my tonsil tissue that they removed to double-check that it's not there.  He said he would have them go through it again.

I then asked him about the Tumor Board.  He first explained some common misconceptions that people have about the Tumor Board.  He then went on to say that it's standard protocol for all cases at this medical facility to go before the Tumor Board and mine did prior to surgery.  I asked if he would present my case again and he said he would.

My final request was to have him scope my throat now to see if he could see anything that would be causing the pain I'm feeling now.  He was reluctant to do so.  I probably would have just let it go but my wife was insistent.  (I'm extremely thankful I have her with me though this.)  He eventually capitulated and scoped me.

First of all it was fascinating to see inside my own body, but everything as far as I could tell looked fine.  He did point out what looked like a very small ridge below my tongue which he said might be the location, but it's very subtle.  To me it looked like nothing and it made me feel good to see my throat tissue look so healthy.  As far as the pain is concerned, he said it could be caused by the cancer/tumor could be pushing up against a nerve.  I asked if it could be post nasal drip or acid re-flux.  He said it could, but he didn't offer up much else.

Finally I asked him if it's safe to assume that because the cancer/tumor is so difficult to find that it's of a certain size.  He said that more than likely it's probably smaller than a centimeter.  Tumors that small or smaller usually don't show up very well if at all.

So, we decided he would do another surgery and biopsy some tissue in the back of my tongue.  It may be a small amount or more if the small sample doesn't prove fruitful.  Depending on the tissue sampled I may go home the same day or need to spend the night.  That would also determine recovery time.  I'm scheduled to go back into surgery Dec. 19th.

He'll also do all the other things discussed to see if any new information turns up.  Hopefully something more concrete presents itself.

Overall the office visit was very positive.  Everything we discussed gave me a sense of confidence that they are doing their due-diligence.  Additionally, I am very pleased with my ENT's attitude.  He was very open and forthcoming with information, open to suggestions and willing to do everything I asked for.  This has been my best experience with him so far and I feel like he's doing everything possible to treat me as anyone going through this should feel.

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.

Smaller Lymph Nodes?

Last night while watching TV on the couch I felt my lymph nodes and they felt significantly smaller.  I did a visual check in the mirror and the swelling around them seemed less too.  The reduction in size didn't look as significant as much as it felt, but still it seems like their shrinking.  It's difficult to quantify but I would estimate they've reduced in size by 40%.

This morning I checked again and they still seem smaller than they were.  I say this because previously they seemed to vary in prominence throughout the day.  They're right by my jugular vein and some neck muscles.  So I imagine the variance is caused by blood flow and how tense the muscles in the neck are.  The more blood flow and rigid the neck muscles are the more the push out the swollen lymph nodes and the harder, more prominent the feel.

I'll have to check throughout the day to see if they remain this size, but I'm thrilled that appear smaller and not bigger.  Oh yeah, the sore throat I had for the last week seems to have dissipated so that's good too.  Over all I'm feeling optimistic and hopeful.

Louise Hay - Love Your Body

I've been meaning to share the "Love Your Body" by Louise Hay affirmation audio book for a few weeks now.  I came across this looking for audio books to help keep me in a positive frame of mind. If you sign up for her newsletter you can get it free, but the free version is only a link to her website where you can listen to it for free.  To download it you need to buy it.  I ended up enjoying it so much that I went ahead and bought it.

The book primarily deals with creating a healthier body image.  What I really enjoy about it is that it also describes how each part of your body relates and interacts spiritually to the world.  It provides plenty of positive, healthy imagery that opens your mind to acceptance and healing.

When I first got it I listened to it driving to and from work.  My commute is long enough that it translated to four times a day.  Since then I've gotten several other audio books that I'm listening to now to help me culture a more positive, healing attitude.  Now I listen to "Love Your Body" while falling asleep to allow my subconscious to absorb it while sleeping.  My wife enjoys this too.

I've also considered using this as a guided meditation.  I think it would be great for that.  I'll have to make time to try this soon.  I've have a lot of attitude to adjust.