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.

Mixed Messages

OkI've been doing reading and research and have been getting a lot of mixed messages.  It seems like there's two camps.  Those that say you can reduce or even cure your cancer by cutting out sugars, red meats, and alcohol and switch to a diet rich in fruits, vegetables, legumes and whole grains.  The other camp says eat healthy, but cutting out sugars, red meats, and alcohol won't help.

Then there's the statistic I keep seeing that 40% of cancer patients die not from the cancer but from malnutrition.  I could see this being caused by severely restricting your diet to fruits, vegetables and grains.  It's really hard to get calories from those foods.  Then you add radiation and chemotherapy on top of that which reduce your appetite and I could definitely seeing people starve to death.

I think what I need to take away from this is, in the coming months of treatment, I need to place calories as a priority.  I'll try to get as much from fruits, vegetables, grains, fish and chicken.  But if I'm in a deficit near the end of the day I'll need to make an exception to get the required calories.  However, that may be harder to make up at the end of the day.  It may be a better tactic to eat some heavy hitters throughout the day.  I just need to find some healthy heavy hitters.

The last several days I've been tracking my caloric intake and can see I've been falling short.  I've been making adjustments trying to get my calories up.  This has just been a big change and it's a steep learning curve adjusting my diet like this trying to find healthy foods with decent calories.  The hardest part is counting the calories of pieced together meals or when dining out.  It's difficult to figure out calories when the food is not packaged.

My Fitbit app does a pretty good job helping me look up and log my caloric intake.  I also have a scale at home that I've been using to weigh raw foods to get their calorie count.  It will take a little time for me to adjust.  I just need to make sure that during this adjustment period I don't fall too far back, especially before my surgery which is only two weeks away.

Luckily I don't have any food allergies and I can pretty much eat anything without it bothering me.  So my options are endless and pretty much revolve around taste.  I'm not a picky eater and will eat pretty much anything as long as it's decent tasting.  So, I have that going for me.

On a side note, I think I've been a little obsessed with trying to find a reason why I got this. I've been hoping to make a correction with diet, exercise and attitude.  Sure, I can do with some changes in those departments anyway.  But I need to quit playing the blame game.  There's plenty of people who do everything "right" and still get cancer.  As they say, "Sometimes shit just happens."  I just need to keep my head up and keep fighting this thing.

HPV Results Positive

The tests results came back and I'm HPV positive.  My second ENT was right.  He said he was sure my cancer was caused by HPV and he nailed it.

I got this information right before seeing my oncologist.  I told him and he didn't seem surprised.  I don't remember his exact response.  He did say that cervical cancer is caused by HPV 99% of the time.  He suggested we get our younger boy immunized against HPV.  Nothing we can do for me and my wife, it's already in us, we just don't have any of the symptoms, except my cancer.

I just looked it up and the CDC says 79 million American's have it.  That's 1 in 4.  So it's pretty prolific, but preventable.

I think it's pretty great that we live in a day and age that we now know about this virus, we know it causes certain cancers and we have a vaccine for it.  You can prevent the virus and you can prevent some cancers.  Pretty awesome gift you can give your child.

Oncologist

So this is a little out of order.  I just realized it's been almost two weeks since my last post.  It just doesn't seem like I've had much time.  Not that a lot has happened in regards to this; just life.

On the 7th I saw my Oncologist.  It was a good appointment.  I brought him up-to-speed and he did a brief exam of my mouth and neck.  He said I was on the right track and I was doing all the right things.  We talked awhile and my wife helped with the questions and notes.

He didn't really seem like this was a big deal.  Sure he was concerned.  I mean, this IS cancer, but he seemed optimistic in the prognosis.  I told him I was concerned that it had spread to my lymph nodes so he examined them.  He said yes they were swollen but they weren't, relatively speaking, that big.  He gave me some examples of sizes that would concern him, I forgot the details, but mine weren't of much concern.  That definitely made me feel good.

Towards the end of the appointment he said I looked "worried".  "Uh, ya!  I have this cancer thing in me.", I thought to myself.  Again he reassured me with a positive prognosis and told me of the woman with the mushroom sized tumor growing in her mouth.  I talked about it in a previous post.

Oh, he also asked me what was the first thing I noticed that caused me to go see a doctor.  I told him the swollen lymph nodes.  He was surprised that the degree my lymph nodes are swollen would have alarmed me enough to seek medical advice.  Almost even baffled.

I'm not one to shy away from a doctors office.  I've heard plenty of stories of how women, being typically more health conscious than men, seek medical advise more frequently and therefore have higher chances of catching diseases early and as a result generally have a more positive outcome treating their illness.  I've also heard enough times how early detection, especially in cancers, is the key to beating it.  Besides,  I have insurance, might as well use it.

Although, I have to say, if I were more in tune or sensitive about my health I may have caught it even earlier.  For about a couple years now I've been doing this, pretty consistent, clearing of my throat.  I only noticed it through a video recording I had made where I could hear myself clearing my throat in the background.  Now I remember...I purchased a dash cam after getting in this accident that this guy outright lied.  I was viewing some video after I had just gotten it and noticed me clearing my throat constantly.

At first I thought it might be a nervous tick or something.  Then, as I was aware of it now and listening for it, I noticed that it seemed to be more prominent after drinking coffee.  So then I just thought it was a reaction to coffee.  I even quit coffee for awhile to get rid of it so I was pretty convinced that it was coffee related.

Come to find out through researching this cancer that "frequent clearing of the throat" is one of the early warning signs.  I'm not sure how long I was doing that before I noticed it on the video.  But I think it's safe to say this has probably been growing in me for a couple years.  I think my wife told me or I read somewhere that cancers are in you for six years before they start to manifest.

But whose to say it would have been detected that early.  I may have gone to a doctor who just said it's acid reflux or something and told me it's of no concern.  Still,  I think the point is, be aware of your body.  If there's even the slightest abnormality get it checked out and get an answer as to what's causing it.  And second opinions never hurt.

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.

pH Update

So, taking baking soda wasn't working out for me.  It gave me stomach cramps.  I tried it twice to confirm and it's definitely the baking soda so I've had to stop using that.  As a result my pH has gone back down to about 5.75.

It's kind of hard to read because you're supposed to compare two color patches and mine don't correlate to the same reading.  One color reads more alkaline and the other reads more acidic.

I haven't done the lemon water the last couple days because I had a non-sugar/fruit diet on Thursday to prep for the PET scan and yesterday I was overwhelmed with doctor stuff and work so I just forgot.  I need to get back on it and find other ways to get more alkaline.

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.

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.