Meeting With Radiation Oncologist to Plan Treatment

I had my meeting with my RO this morning to go over treatment.  I initially thought it wouldn't be too bad but it turns out I was mistaken.

I'll be going to have 35 treatments that will last 7 weeks.  That was expected.  But because the radiation will be targeting my throat area he said there will be pain and discomfort typically starting the second to third week.  He said eating and more specifically swallowing will become difficult and painful and recommended having a feeding tube inserted directly into my stomach prior to treatment.

He recommended it be done beforehand because 95% of people require it and if I waited until I needed it then it may take a week to get done and by that time I would have probably gone with out food and lost weight as a result.  He said it was critical that I keep up my nourishment during treatment.  Some normal healthy cells will suffer the damage of the radiation and nutrition will be required to minimize damage and allow them to be repaired.  So ya, I wasn't expecting and am not looking forward to that.

The feeding tube insertion procedure will be outpatient and I'll be awake through it.  He said it's pretty simple.  Doesn't sound simple but I'll take his word for it, until my curiosity gets the best of me and I start researching it in the middle of the night.

There were a long list of other side effects or reactions mostly temporary such as fatigue, red irritated skin like a sunburn including the possibility of blistering, loss of saliva, loss of taste, loss of facial hair at the area their radiating, can't shave because it might irritate the skin and others.  Because the area of radiation is more focused and on one side I shouldn't lose all my salivary glands, but I still may experience some dry mouth.  The loss of taste should recover over time, but some things may permanently taste different.

Overall it's sounding like 8+ weeks (including post recovery) of hell.  On the bright side he said I can expect a full recovery with this type of cancer.  So, I've just got to weigh the good with the bad and if I have to go through 8+ weeks of pain and suffering to survive another 5, 10 or 15+ years it will be well worth it.

I was initially planning to try to work through the treatments maybe spending extra time working from home.  But if it turns out to be as difficult and painful as he's making it sound I might just take a medical leave the last 4 weeks or whatever is necessary.  I'm going to start planning for that and if it turns out I can work then I can always do that.

I've already scheduled an appointment with my dental hygienist to have a varnish applied to my teeth to protect them through the process.  I'll probably be called by the RO's office to come in to do my mask and another CT scan to ensure everything is lined up properly.  The mask is like a jig or guide the robot uses to target the area that needs radiation.  The radiation therapy will be IMRT which is supposed to be some advanced, highly targeted, system.  I've also contacted the new oncology office next to my RO's office to see when they can get me in so that I can start chemo on or around the same time.  A lot of ducks to wrangle.

So if everything comes together I will probably begin therapy Tuesday, Dec. 27.  At least I'll get to enjoy Christmas dinner and maybe even New Years before things start going downhill.

Second Surgery Pathology Report

My ENT spoke with me over the phone yesterday to give me the results of the pathology from my surgery.  It was nice that he didn't make me drive in to get the results since it's an hour drive to get there and our conversation lasted less than 10 minutes.

He said the pathology results came back positive for squamous cell carcinoma in the lingual tonsil tissue.  There were two foci of scc; one 4 mm and the other 6 mm.  He said they were very small.  I  wanted some scale so I looked up the average size of a green pea and found it to be 7.4 mm, so these were smaller than the size of a pea.  I consider the fact that they found the cancer very good news.  Now the somewhat bad news.

They were near the edge of the tissue that was removed.  He said if they were at the center of the mass that was removed I would be done because that would mean he had plenty of margins to be confident that no cancer cells were remaining.  However, due to the fact that they're near the edge, he's pretty confident that there are some microscopic cancer cells remaining.  He said that my body may take care of the remaining cancer cells during the healing process, but he can't be sure that will happen.  So he's recommending moving forward with radiation and also chemotherapy albeit a mild form of chemo that has very few side effects.

Actually, I'm kind of glad he's recommending radiation and chemo.  I'm not sure I would be so confident with just a surgery.  Mostly because I got that stuff going on around my Adam's Apple, even though it may be related to the surgery's I've had.  By doing the radiation and chemo it gives me that extra bit of confidence that we're not missing any straggling cancer cells.  I want to make sure this thing is wiped out to oblivion!

Also because I recently signed up for Imerman Angels, a support network where cancer patients can speak with a mentor who's survived the same type cancer they have.  I spoke with my angel about a week before surgery who's been a survivor for 15 years now.  She was a nurse at the time and was very aggressive with her cancer.  She told her doctor she wanted the strongest radiation and chemo because she too wanted to be 100% sure it was gone.  I don't know if I want to go that far, her cancer was a little different after all and it was 16 years ago so I'm sure things have changed.  But I'm happy with my plan and I think it should be thorough enough.

I've already contacted my radiation oncologist and heard back from his medical assistant.  I have an appointment first thing Monday morning where we'll have a brief meeting on what they found and where and what the treatment will entail.  I also let them know about my ENT's recommendation for chemo.  The MA said that they have an oncologist right next door.

(I didn't realize that an oncologist is the doctor that administers chemotherapy drugs until I just looked it up now.  I already have an oncologist, but I spoke with him right before my surgery and he himself went in for surgery two days after I did and told me he'll be out for six weeks.  That and the fact that this new oncologist will be part of the same Medical Center, for more fluent information exchange, and right next to my radiation oncologist it just makes sense to switch.)

Anyway, the MA of my RO is going to bring my file over to the oncologist next door and have them contact me for an appointment to get everything coordinated.  So, I keep moving forward.

I'm not sure how soon I'll be able to start treatment.  I believe my ENT originally said two weeks after surgery and two weeks will be next Tuesday.  There some setup involved and I think they need to get approval from my insurance.  So I'm guessing I'll probably start in a couple weeks.  I know how long appointment sometimes take so I wanted to get the ball rolling.  So if I start just after Christmas I'll be done by February sometime.

I still have significant discomfort in my throat when swallowing and talking and I'm on a soft food diet until Monday.  Can't wait til Monday!!  All the six-dollar burger and pizza commercials are killing me.  Lol.

Yesterday I stopped my pain meds, mostly because I ran out, but was pleased to discover that I didn't really need them anymore.  I don't really like having to take medications if I don't have to.  Not sure if there are actually people that do, but maybe so.  Wouldn't surprise me.

Oh, I also checked my weight this morning and hit 150.  That kinda hit me hard.  My caloric intake hasn't been what it should be but I'm not beating myself up over it.  I've been doing my best with recovering and all.  But 150 is where it stops.  With radiation and chemo coming up I'm bound to lose weight with the expected loss of appetite so my goal now is to start regain those lost pounds.  I need to be aggressive with increasing my caloric intake.  Just need to hold on til Monday!! ;)

HPV Immunization

I forgot to mention in my previous post that my ENT also recommended my whole family get vaccinated for HPV, minus my nine year old who should wait until he's twelve.  I asked if it was really beneficial being that I've already tested positive for HPV.  He told me the latest vaccine covers nine variants of HPV, seven of which can cause cancer.

What can happen is that they can team up and create a more aggressive cancer.  So even though I've tested positive for it it's best that I get the vaccine to prevent infection from other strains which would increase my chances for getting a more aggressive HPV related cancer.

I also heard that there are a lot of HPV strains, with new ones being discovered all the time and asked him about that.  He deferred to his intern who said that we know of around 200 strains of HPV. The vaccine covers the most common ones.  Definitely worth consideration, especially for people who are not in a monogamous relationship.  If only they knew about HPV and had a vaccine 30 years ago.

Second Surgery - Lingual Tonsil Removal

I went in for my second surgery on Tuesday, Nov. 29th to have my lingual tonsils removed.  I was scheduled to go in at 1:30 PM, then got bumped up to 12:00 PM then got pushed back to 4:00 PM.  A little annoying but we rolled with it, my wife and I.

At least this time we warned them of the difficulty I had last time of getting my IV inserted.  As a result of us mentioning this they prepped my arms by rolling them in warm towels and hot packs and sent in a very skilled nurse to start my IV.  She was brilliant and got it the first try.  I can't tell you how much of a relief this was.

I don't recall if I mentioned this previously but it took three different staff members on three different locations on my body to get my IV started last time.  I almost ended up passing out.  Finally the anesthesiologist got it done.  Besides recovery, the worst part of the last surgery.

The staff mentioned on several occasions that I would be meeting with my doctor, which didn't happen last time, before surgery but I was prepared to insist on it if need be.  I was relieved when I saw him and I knew I wouldn't have to push for it.  It's always nice to be able to talk to your doctor before and after surgery.  Last time his physician's assistants gave me wrong information before and after surgery.  This time I was determined to get it from the horses mouth, as it were, before and after my procedure.

I wanted to make sure that when he had me on the table and before he removed my lingual tonsil that he scoped my throat and went all the way down past my Adams Apple which is where I'm experiencing the most pain and discomfort.  I also wanted him to make sure that there wasn't anything going on down there.  He insured me that he would.  He also explained that he would be removing both lingual tonsils.

I met with my anesthesiologists one of whom said a prayer for me.  They then administered the sedative that would "relax" me and before I even got to the operating room I was out.

I awoke about four hours later in my recovery room with my wife by my side.  The surgery only took a couple hours.  Post surgery is a lot of checking vitals and making sure everything starts working again.

The only thing I had trouble with was urination.   I initially thought there was something wrong with me.  I just didn't feel the need to go, but apparently that's a side effect of the anesthesia.  I had to be "drained" once with a catheter.  I've never had that done before and the discomfort motivated me to get on-board the pee train, sorta speak.  I knew that if I tried, I could go a little, whether I felt it or not.  Now all I had to do was go more often and I could keep my bladder below the point, approximately 500 ml, where they would have to catheter me.

Apart from that everything else was pretty normal.  I was able to drink clear liquids, protein juice and jello, and take my medicine, with the aid of the Aloe Gloe I brought.  I stayed overnight and  began an advanced liquid diet the next day consisting of creme chicken soup, sherbet and pureed pears.  The soup was good and I was able to finish it which was a significant accomplishment because it allowed me to get the calories needed to heal quickly.  The sherbet was ok but after I saw all the sugar it had I put it aside.  Nutritionally it was just not going to contribute to my healing so why bother.  The pureed pears were too acidic and burned going down so I left those unfinished too.  I also had one of the vegan protein drinks I had brought; another moral booster due to the calories and nutrition it provided.

In the afternoon they finally gave me the news that I could go home.  I think that's always welcome news when in the hospital.  Everyone was really nice and attentive there, but, as they say, there's no place like home.  I heard my doctor was in the building so I asked if he could come by before I left.

He came in the room with a couple interns, I believe.  I'm not sure since he didn't introduce them.  He was under the impression that we had specific questions for him ready-to-go but I really just wanted to talk to him about the surgery.  He seemed kind of put-off, but my wife got the ball rolling and it turned out to be a very informative conversation.

The obvious question, which he had already informed my wife who in turn informed me, was that initial pathology didn't find any squamous cells in the tonsil tissue.  They'll be sending that out for a detailed analysis which should come back in five days.  He said they removed an area about the size of two half-dollar coins stacked on top of each other.  I was surprised at how large of an area they took out in relation to the relative little pain I felt.   He also took out a ridge of suspicious tissue in my throat and that was healthy too.

He did scope my whole throat again going below my Adam's Apple and he said all the tissue looks really healthy.  He said this will be my last surgery, at least for awhile unless it shows up somewhere else.

I asked him where else it could be hiding.  He said either my immune system got rid of it, my body formed a cyst around it somewhere, or it's somewhere very, very small.  I then asked if at such a small size could it still have spread to my lymph node?  He nodded and said, "Yes.".

He also acknowledged the contribution I made in discovering the discrepancy in radiology images to his interns.  He said I am the person responsible in bringing it to their attention that images were missing when transferred between databases.  He let me know that they had a meeting that very morning with radiology where he had some firm words expressing his dissatisfaction with the discrepancies in the system and was determined to get it corrected.  That made me feel good to think that I may have had a part in finding a flaw in a system that, once corrected, will insure people can be diagnosed more accurately.

Despite him being a little put off by having to come down without me having pre-scripted questions he ended up being very forthcoming and communicative with the conversation even venturing into the jovial realm at times.  I'm sure the pumpkin bread my wife brought him and his staff had a little something to do with that.

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.

Moving Forward Again

Friends to the Rescue
I posted to Facebook asking my network of family and friends for a referral to a radiologist for a second opinion of my scans.  It wasn't long before for a few of my friends reached out to me.  That alone was enough to raise my spirits and made the world of difference emotionally.

I spoke with my friends brother-in-law over the phone this morning on the way to work.  He's a doctor out of San Francisco.  Very nice guy who was genuinely concerned for my well-being.  He had a few great suggestions.

He recommended I have my case reviewed by the Tumor Board.  Being that I'm young, have had surgery already and the primary site was still unknown made me a good candidate.  The Tumor Board is a panel of doctors that review cancer cases to discuss the PET/CT/MRI images, tests or pathology results and past treatments.  They brainstorm and decide on what best course of action would be.  Sounds perfect!  I feel like the more people I have looking at this the sooner it'll come to a resolution.

It also seems to me like my Oncologist and ENT aren't communicating much, if at all.  I asked if he recommended having an Oncologist at the same medical center as my ENT and radiation oncologist and he did.  He said my Oncologist should really be the one spearheading my treatment and if he's at the same medical center as the other doctors he can bang on doors and get answers.  I did some research and I think I found one.  Just have to make an appointment.

Another thing he said I could do is ask my ENT to have the pathology department take another look at my tonsil tissue that was removed.  He said the tissue is usually saved and sometimes the first look doesn't always prove fruitful, but a second look does.  It's worth a shot.  Hopefully my ENT agrees.

So that conversation was pretty awesome.  It gave me some direction and confidence.

Pain in the Throat
However, there's still the fact that I wasn't scheduled to see my ENT until Dec. 1st and I'm still experiencing intense, sharp pain in my throat throughout the day.  It was bad enough last night that I was seriously considering going to the Urgent Care or Emergency Room last night.  Then I did some research.

I found, on the Internet of all places (lol), that pain around the Adam's Apple, which is where I'm experiencing it at the moment, could be caused by acid reflux (which could be caused by stress) or post-nasal drip.  I thought about that and, obviously, I've been stressed lately, especially in the last month or so when I first heard the news that they didn't find the cancer in my tonsils.

I've also been having some post-nasal drip, maybe even during the last couple weeks.  Hmmm.  So lastnight I took some Benedryl before bed.  Will help me sleep at least.  This morning, no difference, but it may take a few days.  So I'm going to take some antihistamine/decongestant over the next few days to see if it goes away.

Enter the Wife
But my wife, on the other hand, is not going to standby and let me suffer.  She could see I was miserable and was in pain.  So she asked if I wanted her to call to try to get me into the ENT earlier.  I was highly doubtful she could.  I had already called and left a voicemail letting them know I was in pain and wanted to be seen sooner.  Maybe they were just waiting to see if I was REALLY in pain and would call back?

I figured it couldn't hurt so I told her to go ahead and give it a shot.  Well, she blew my mind.  In a few minutes she had gotten me an appointment first thing in the morning the very next day!!  I asked her how she got me an appointment so soon?  She told me that unleashed "bitch mode" on them and they got me in.  Wow!  Word of warning out there, don't mess with an Irish woman or her man.  Word of wisdom, if you have cancer, hope you have a spouse that has a fully functioning "bitch mode" available. ;)

Measure Twice, Cut Once

As I've mentioned previously I've been pretty frustrated with my treatment so far.  It's been over seven weeks since my surgery and the pain in my throat around and below my tongue has been getting worse while the pain in the area that my tonsils were removed from has practically disappeared.  This has been leading me to suspect that the cancer is in or near my lingual tonsil.

Today I scheduled an appointment with my second ENT for Dec. 1st, earliest availability.  I also called my first ENT to hopefully get in to see him sooner to maybe go over things with him and have him examine me again to hopefully get some answers.  He's booked out even further.  I asked one of his staff if she could ask him to confirm where he saw a nodule/tag when he first scoped me.  I'm not sure if it was in my Palatine tonsil or further down.  He's been pretty good at calling me in the past so I'm hoping he'll call me tomorrow.

So then I decided to look over my PET and CT scan images.  What I noticed shocked me.  From the images it was pretty obvious to me that the tumor was not in the area of my Palatine tonsil like the radiologists report indicated, but in or near my lingual tonsil.  It's pretty clear, the images show the tongue and the "hotspot" is below it right next to my matasticized lymph node.

I immediately emailed my ENT and Oncologist a note with a copy of the image.  I haven't heard back from my Oncologist yet by my ENTs MA emailed me back and said that the doctor would have to see the image CDs himself to make a determination.  What the what!!! They told me way back in September that they would be obtaining the image CDs themselves and I signed paperwork giving them permission to receive copies.  Now they're saying they never got them!  Why wasn't I informed?  I would have happily made copies and personally delivered them.  Why would he have performed the surgery without confirming the radiologists findings? WTF!? Ever hear of "measure twice, cut once"?

If I am correct in my suspicions, that the images indicate the tumor is in my Lingual tonsil and not my Palatine, that the radiologist screwed up the report, I will seriously consider pursuing a malpractice lawsuit.  For having undergone the wrong surgery as well as the pain and suffering that accompanied recovery, for delaying my treatment/cure, distress and anxiety for having undergone a procedure in which nothing was found, the pain and anxiety I'm feeling now which would have been prevented had I had the correct procedure performed instead.

Just trying to get my doctors to look at the images and get confirmation.  I just want to be cured of this cancer.  Just do your due diligence and do your effing job.  Find it, kill it, and give me my life back.

I'm gonna contact my radiation oncologist tomorrow too just to see if he ever got the CDs and see if he needs me to bring him by copies.

At this point, if it is in my lingual tonsil, not sure what treatment I'll pursue.  I believe my ENT said it's a 45 minute surgery.  If that's the case I'll probably go that route.  Not looking forward to getting cut up, again.  Will consider radiation/chemo too.  I just wish I could get some answers so I can move forward with treatment.

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.

Post Tonsillectomy and Neck Di-section Surgery - One Month Later

Well, it's been four weeks after my surgery, the time my ENT said it would take for me to heal from the surgery.  However, I think his definition of healed is different than what I had in mind.  I now believe his definition was that would be the time it took for my wounds to be healed to the point that they are fully closed and I would be no longer be at risk of them reopening.  In that sense, mission accomplished.  However I am far from "healed" in the sense that I am back to normal.

I still have numbness running from my ear down to my collar bone, but I feel this has improve incrementally over the last week or so.  It started around the 22nd of October when, for a couple days, I felt lightening bolts travel through my neck a few times.  Lightening bolts is probably too powerful a word.  They were more like small electrical jolts.  None-the-less that seemed to be the beginning of increased feeling through this area.  The mixed areas of numbness and feeling have made shaving and moving my neck feel very strange.  This is just a mere annoyance I believe will go away with time.

The more disconcerting thing is going on in my mouth.  Although my voice has returned for the most part I can tell my voice has changed.  If I talk loud enough it sounds, at least to me, like I have a speech impediment.  It sounds slurred or like when a deaf person speaks though not as pronounced.

Drinking is also another problem.  I can no longer take a continuous drink.  I have to take small sips and carefully swallow and always in a fully upright position otherwise it goes straight up my sinuses.  Food is not as much of a problem but occasionally there's an area that seems to capture food and I can feel it in the back of my mouth just sitting there stuck.  Typically a drink is sufficient to free it.

Another thing that I've noticed that's changed is my smile.  It looks mechanical and forced, which I guess it kinda is since part of my jaw is still numb so at least I have hope that it will return back to normal when the numbness subsides.

Finally, whenever I sneeze, cough or yawn it feels like the back of my throat is tearing open again.  I try to suppress these actions to reduce the pain, but as much as I try they always hurt.

These all may seem like little things; maybe they are.  I think these annoyances would have been easier to accept if they had found the cancer in my tonsil and successfully removed it.  Then at least I would have had a net gain.  However, since they didn't find the cancer there I now have to face the fact that I may lose more of who I am, suffer more discomfort and lose more functionality in order to find the cancer that may or may not be there anymore.  How much more of my body will have to be carved up to be cured?

I saw my radiation oncologist a couple weeks back.  He said he was reluctant to proceed with any radiation therapy unless ordered by my ENT.  This struck me as kind of odd since he seemed more concerned about stepping on my ENT's toes rather than doing what was in my best interest.

Then I saw my oncologist this week and this concerned him as well.  He thought each doctor should form their own opinion as to which is the best course of treatment with the best interest of the patient at the forefront without regards as to whether will offend the other doctors.  Up until this point they were all in agreement, but now that the primary site wasn't where it was suspected there's some disagreement as to how to proceed.

They all still agree to do the MRI.  If the MRI shows something, fine, then we'll have a definite direction.  However both my ENT and oncologist are skeptical the MRI will find anything.

If it doesn't, my ENT wants to play the wait and monitor game where I'll go in for scans at regular intervals to see if it turns up anywhere.  My oncologist thinks that if the MRI is negative that I should go ahead with radiation to the whole region.  The only problem with that is that my radiation oncologist said that I could lose all function of my saliva glands.  As a result my mouth will be constantly dry and I'll have to carry water on me at all times to hydrate my mouth.  That does not sound fun.

It's amazing the little things we take for granted like being able to salivate but realize how important they are when they're on the table to be taken away.  Kind of like Sophie's Choice but with your body.

So, as far as this is concerned, I'm waiting on my MRI.  That is scheduled for November 13th.  I had it scheduled for tomorrow, but that's a whole other story I'll save for another post tentatively titled, "My life as a cash cow."

Shout Out to Aloe Gloe

I wanted to give a brief shout out to Aloe Gloe for being a huge aid during this period of recovery from my tonsillectomy.  It has saved me much pain and discomfort on a daily basis.

I've used it since day one to chase down food even the soft ones like soup, mashed potatoes and spaghetti.  I've used it as a follow-up to other drinks like milky protein drinks that left my throat feeling mucilaginous.  Most importantly I used it to make taking liquid Hydrocodone (my pain medication) tolerable.

It's kinda ironic that in order to be relieved of my pain I have to endure the added pain of taking my pain medication.  At first I used it to chase the medicine.  That provided follow-up relief but it still required me suffering through a moment of painful, burning sensation in my throat.  But I soon realized that if I poured my dosage of Hydrocodone into a small glass and mixed in an ounce of Aloe Gloe it tremendously decreased the burn of drinking the medicine straight up.

Luckily I thought of using aloe water immediately after surgery.  I didn't have any previous experience with this product, it was just one of the aloe drinks my wife happened to come upon while trying to fill my request for an aloe drink.

There are quit a few out there but I didn't want one with a lot of sugar or any other added ingredients or pulp to make swallowing any more complicated than it already was.  I also tried aloe products with coconut water, but the coconut made my mouth and throat feel dry.  I just wanted something that was soothing enough, that I could drink everyday and that wasn't as harsh as water.  You wouldn't think water is harsh but when your throat is raw you can definitely feel how harsh it is.  Kind of like dry winter air on chapped lips or dry sinuses.

Anyway, I just wanted to share my experience with this product so that others could hopefully benefit from it and be saved of any unnecessary discomfort.  Live well, heal fast.

Surgery Follow-up and Pathology Report

I went in for my follow-up with the ENT doctor that performed my surgery.  He looked at my neck and mouth and said everything was healing as expected, actually better than expected.  He said I shouldn't expect the pain to go away before next week.  I just need to apply some lotion to it and it should heal nicely.

My wife asked about my weight loss.  He said typically patients lose about 20 lbs after this procedure.  We were both pretty surprised at that high a number.  At this point I've only lost 5 lbs but it's definitely noticeable.  I can tell you that keeping your weight it definitely a problem because eating is so painful.  I typically only have a couple good hours to eat after taking my pain medication because after that it gets increasingly painful up until the time comes around that I can take another dosage.  The reason I can hold out taking the pain meds is because it's only painful to eat or talk.  If I don't do either of those two things the pain barely registers.  That is until about the 4.5-5 hour mark at which point pain starts to creep up whether or not I talk or eat.

He asked how my shoulder was since there was a chance of me losing motor function or feeling numbness in it as a result of surgery.  I said it was perfect.  Totally normal.  I did tell him that my right ear was numb and part of my right jaw.  He said that was normal and feeling should return to those areas in about four weeks after surgery.

Then we moved on to the pathology results.  He said there was good and bad news and proceeded to give me the good news first.  The good news is that they only found squamous cells in one of the thirty-one lymph nodes they removed.  So, he said, as far as my neck is concerned I am totally healed of cancer there.  That's awesome!

The bad news, he said, was that the tumor wasn't in the palatine tonsil they removed.  I think I might have said in an earlier post that I thought they removed all the tonsils on the right side of me.  Turns out they only removed the right palatine tonsil.  He said it did have two masses in them; one about the size of a pea and the other about the size of a .177 caliber BB.  However when they cut them open and examined them under a microscope there weren't any squamous cells in them.  They did find actinomycosis present which is a type of bacteria.

He said either the cancer was there and my body took care of it (ie - healed itself) or it's somewhere else.  He said since he could feel the masses in my palatine tonsil and he was confident that those were the tumors they were looking for he didn't remove any other tissue, specifically my lingual tonsil.  However, he said that since it turned out not to be in my palatine tonsil, there's a 10% chance it's actually in my lingual tonsil.  Those are the tonsils below the tongue in the front of the throat and are actually the ones I thought they were originally going to remove, but I had the names mixed up.

I asked him what about the chance that my body healed itself.  He said that's about a 10% chance, but he said it's entirely possible.  However they play the percentages and wouldn't rule that as a possibility until they've ruled out more probable possibilities.

I asked what do we do now?  He said that we let me completely heal from this surgery and in about four weeks we do an MRI scan of the area.  He said that's the most accurate scan for this but is still only about 60% accurate.  If that indicates a mass then we go in and take out the lingual tonsil.  If it doesn't show anything then we can still opt to take it out and have it sent to pathology and have them see there's any squamous cells in it.  That surgery will be similar to my palatine tonsil removal but will only take about 45 minutes and will still require an over night stay.

Since they didn't find a primary site they can't do radiation and chemotherapy because they don't have  anything to target.   So that's off the table.  My other option includes not doing anything but wait, scheduling regular visits/scans, to see if it turn's up somewhere.  He said the tonsils, which are similar to lymph nodes, form a circular system in your mouth and are all interconnected.  He said if it turns up he believes it's going to be somewhere in that system.

I'm not 100% sure what to do at this point.  I'm kind of leaning to the MRI scan and lingual tonsil removal.  The doctor didn't give me the impression that the wait and see plan was a good idea.  I'm also not looking forward to another tonsillectomy, but if it answers questions then I'd be willing to go through it again.  I'll need to gain some weight back first.

I think I need to do some more research on the actinomycosis they found in my tonsil and what that could mean.  Perhaps I need a second or third opinion on these results.  I may run them by my previous ENT and seek a consult from one at UCLA.  Their ENT and cancer departments are ranked in the top five in the U.S.

In the back of my mind I keep thinking how wonderful it would be if I did beat this with the lifestyle changes I've made since being diagnosed.  I keep that as a possibility of hope, but I remain prudent and want to be thorough in my thought process.

So, kind of mixed news.  On one end of the spectrum I may be cured.  On the other end it may just be hiding somewhere.  I'm really looking forward to getting off this liquid/soft food diet.  Not to mack down on burgers and fries, but to get back on my anti-cancer diet.  Actually, a burger sounds pretty good too.

Day of Adjustment

Got up and walked around the block this morning.  Nurse said it was important to walk to prevent blood clots.  So I did a few times today.

Hydrocodone was wearing off before the a lotted time to redose of 6 hours.  I spoke with my doctor's office and they authorized more frequent doseages of every 4 to 5 hours.  I'm going to try to stay on a 5 hour interval first to see if that's adequate.  Personally I don't like using meds unless absolutely necessary.  The hydrocodone or hydro as the nurse called it is doing the job decently.  I'd say 90% which still makes it difficult to eat, or should I say drink being that I'm on a liquid diet, but I can still power through it.  I discovered that if I swallow on the left side of my throat it's less painful, less uncomfortable.

I was able to work today from home due to the hydro.  Being in I.T. isn't physically demanding, I just need to be aware of my posture and ergonomics while sitting in front of a computer all day to make sure I don't stress my neck.

My wife picked me up some aloe water which feels amazing on my throat and especially helps me swallow some protein drinks that cause discomfort going down.

I rested today at lunch and after work watching or more accurately listening to the "Moving Art" series on Netflix.  They're a series of nature video clips set to calming music.  They cover various themes like desert, waterfalls, flowers, etc.  I love them.  They're so relaxing.

I also tried to get more comfortable sleeping.  I wasn't that uncomfortable I just needed to sleep on my right side because my left was getting sore.  As a result I think it caused additional swelling in my neck.

So I tried sleeping on our reclining sofa and it felt pretty good.  I could precisely select a neutral position which I'm hoping helps with breathing and the swelling in my neck.

Anyway, I just took some hydro and am dozing off writing this.  Time for sleep.

Surgery: Tonsil and Lymph Node Removal

I went in for surgery Monday.  They started around 1:30 PM and ended around 5:30 PM.  I didn't get to speak with my ENT that performed the surgery afterward but I spoke with a resident doctor.  He said the surgery went as expected. He said they were very aggressive, more so than a normal tonsillectomy, removing all the tonsils on the right side to make sure they get all of the cancer.  Feels like they drove a bus down my throat.  He said they also removed all the lymph nodes in the right side of my neck.  The pathologist on premises didn't find squamous cells in the slice of tumor he took but he's 90%+ sure that they will when they send the tissue to the lab. That will be in about a week.

The off-site pathologist will go through the tonsil tissue and each one my lymph nodes under a microscope to determine the direction of any future treatment. It should take about a week until I get the results.

I was told that there was some risk of nerve damage to the right side of my jaw and right shoulder but those areas weren't effected.  I did notice, while I was putting on my shirt to check out of the surgical center, that my right ear was numb.  So I guess if you're going to have something to go numb the ear would be the best case scenario.  You don't have to move it and you don't use it to feel things.

At around 2:00 AM that night I was up and about walking the halls a bit.  The nurses said walking its good because it prevents blood clots.  So I continued to walk every few hours.

Throat is expectedly sore so I'm on a liquid diet for now. Pain level is low though it's difficult, uncomfortable, for me to speak.  I think because they took out so much tonsil tissue.  I'm able to drink and eat (jello, sherbet) a bit. It's more awkward than painful.  I'll be on this diet for about a week then I'll move to a soft food diet.  Oatmeal, spaghetti, mashed potatoes, etc.

I'm on antibiotics, hydrocodone pain killer and Tylenol.  I can't take the hydrocodone pain killer during the day because it puts me to sleep, so I'm only using it at night which helps me sleep.  It also burns when going down so I'm chasing it with aloe water which feels really good.  I'm taking children's Tylenol because it comes in a suspension and is easier to swallow than pills.  I'm just adjusting the dosage for an adult.  It also doesn't put me to sleep and doesn't thin my blood so if I do start bleeding in my throat it will hopefully stop faster.  And the Antibiotics are obviously to prevent any infection from creeping in.

I'm home now and trying to adjust to the medication schedule, sleeping and taking it easy.  I'm not supposed to lift more than ten pound to prevent sutures in my neck from popping open so I'm constantly having to remind myself not to do or lift things that I usually do everyday without thinking.

Lymph Node Size Update

Just wanted to post a quick update on the size of the lymph nodes in my neck.  Earlier I had posted that it seemed like they decreased in size.  Now I think they are about the same as they originally were or are larger.

It's very difficult to gauge since a large, wider area of skin around the area is also swollen and the lymph nodes are right on or around a large neck muscle and jugular vein.  They seem to vary the prominence of the lymph nodes underneath.

Most of this is moot since I go into surgery on Monday to have the tumor and lymph nodes removed.  At that time I'll get some more solid information on the scale and stage that I'm in.

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.

Physical Lab Results

I got the lab results back yesterday for the blood work for my physical.  All tests came back normal.  Reminds me of a Smog test and finding out everything is within spec.  Guess I have that going for me, right!

Finding the Right Doctors and Hospital

I've been trying to find the best doctors and hospitals in the area that are covered by my insurance.  Wow, is it tough.  I've been satisfied with my ENT so far but wanted to have options.  He said he was fine referring me to someone else and recommended a doctor at a local university hospital.  I was like, "OK.  Let's give it a shot."  So his office gave me a name and I got an appointment.  Then I started doing research.

This university hospital advertises on their website that they're a top rated ENT hospital as reported by U.S. News Best Hospitals, but that was in 2008.  OK, well what about now?  So I went to U.S. News website and looked it up.  Not doing so well now, at all.  OK, so what are good hospitals in my area.  None, apparently.  I also found Hospital Safety Score and found most of the hospitals in my area only garnered a "C".

I also did research on my doctors on a couple different websites at the top of Google results.  To put it simply I wasn't exactly impressed with what I found.  The reviews were mostly unflattering, to say the least.  I took it with a grain of salt knowing that most people who are going to take the time to find a site to post, register and write the post have something negative to say.  Still, I wanted to see if I could find better.

I expanded my search to local metropolitan areas and found a university hospital in a major city that was rated #4 nationally for ENT and #5 nationally for cancer.  That got my hopes up.  So I checked my insurance and found two doctors that were in-network that were affiliated with that hospital.  One of them was the Professor and Chair of the Head and Neck Surgery Department.  I got pretty excited, that was until I did research on him.  Again I found reviews that were less than flattering.

During this process I received a call from a friend and co-worker.  We discussed what I was going through and he provided some encouraging words, stories and offered assistance in whatever was needed to help me battle this illness.  He is also one of my bosses and told me they would be willing to work with my schedule to get me the care necessary.  I just have to take this moment to say how huge of a relief it is when going through something like this that you have the support of your employer and know they've got your back.  Huge relief and gratitude.

He told me of his wife and her doctor and how good he was and that they've even become best friends over the years.  He said that I could send doctors names his way and he would look into them for me.  So I did but he said that he wasn't familiar with them.  Then it occurred to me, why not just see him.  I did some research and found out he had an office nearby and was "in-network".  I asked my friend if he was taking new patients and could see me and he said he was.  Long story short, I have an appointment to see him next Wednesday.

This doctor is an Oncologist, not an ENT like my other doctor, but the ENT he said he refers out to, based on the research I've done, is highly regarded AND is affiliated with a hospital that received an "A" by Hospital Safety Score.  So, ya, I'm excited.

pH Strips

The pH strips arrived Saturday and everyone in my house tested.  Me and my boys were all around 5.5 to 5.75 which is acidic.  7.0 is neutral.  My wife tested and of course she's 8.0.  Probably attributed to the fact that she's vegan.

So I immediately began drinking 1/2 lemon juice and 1/2 tsp. baking soda water as recommended by this article.  I kinda expected this to be a struggle of trying things and not getting results then trying something else.  However, this morning when I woke up and tested my pH was at 6.75!  Didn't expect results this fast.  Awesome!

Tentative Pet Scan

So I received a call from the imaging center just moments ago, pleasantly surprised to hear from them on a Sunday.  I have a tentative appointment for early Friday morning.  Not as soon as I'd like, but I let her know to call me if they get a cancellation earlier.  She said they would.

Just went over some questions and what I needed to do to prepare for it dietary wise.  She was very professional and thorough.  I always appreciate that.  One step forward.

Change In Diet and Daily Routine

So immediately after I was diagnosed I began doing research and, along with the help of my wife who is well versed in holistic and alternative healing, began implementing changes in my diet and daily routine.

I switched from drinking coffee to green tea.  The catechins are the anti-cancer components in green tea and I read that you don't want to brew the tea at boiling point because it destroys them at that temperature.  A comprehensive study details catechin content results based on brewing temp and time and the sweet spot is around 176 degrees for 20 minutes.  The longer it brews, up to 80 minutes, the more catechins are present but who wants to wait that long to drink their tea.  So I'm using a thermometer to microwave the water to that temp (just over 2 min) and then steep the tea.  I also read catechins are better preserved with vitamin C.  They recommend adding citrus to your green tea, the best being lemon.  So I'm doing that as well.

I'm drastically reducing if not wholly eliminating refined sugars, alcohol, red and barbecued meat since they all contribute to cancer growth.  I'm using the anti-cancer oil my wife blends.  She also told me that cancer thrives in an acidic environment so I should try to get my body chemistry more alkaline.  She ordered me test strips to determine my pH and recommended and eat more fruits and vegetables that aren't acidic.  A quick Google search provided other ways to become more alkaline.

Apart from that I'm working hard at being positive and reducing negativity from my life.  I'm continually open to all possibilities and options to beating this thing.

I'll close with a quote my wife texted me in the middle of the night..."A grateful heart is a magnet for miracles."  I am grateful for everyday that God gives me.

My Wife

So after I made my last post I was pretty shaken.  Luckily I had the sense to talk to my wife and she grounded me.

She told me that there are many factors to surviveablility besides the "Stages".   She reminded me to stay positive and to visualize my body being cancer free.  She said she believed people who are given the challenge of a life threatening disease are provided the opportunity to "Level Up".  To advance spiritually and gain a higher perspective.  She reminded me to allow my higher power to guide me through this ordeal.

She is the most kind, positive person I know.  I'm blessed to have her in my life.

Now I've got to go to bed and visualize a cancer free me.

Stage ??

So, searching for some hope, I thought I would look up the prognosis for SCC.  I was happy to find out it was "Excellent" until I realized it was for SCC found in the skin.

So I decided to look up the Stages.  Bad news...from what I've read looks like I'm Stage 2 or 3.  F**king awesome!  Holding out hope for official prognosis after Pet Scan but it looks like the news keeps getting worse and worse.

I stayed home sick today because on top of this I got a cold.  The doctor's office sent in the order for the Pet CT today and today would have been a great day to do it.  Guess I should have called them and been pushy.  That's not how I am but I may have to get that way.

Game Plan

Just got off the phone with my ENT.  Wasn't expecting a call til tomorrow.  Nice to see he's taking this as seriously as I am.

He reaffirmed the diagnosis from Monday and outlined a game plan.  I first need to get a full body Pet CT to try to identify the site of origin.  If that doesn't come up with anything then there's a tag on my tonsil that he suspects.  So we'll have to wait and see what the Pet CT turns up.

Once the scan results come back he want's to do surgery ASAP to remove the tumor and perform a neck dissection to take out the lymph nodes on the right side of my neck.  He said if it's the tonsil and a neck dissection it will take about 4 hours of surgery and a 2-3 day hospital recovery.

I asked him how many of these he's done and he says he does one about every other month.  He also said that if I don't feel comfortable with him performing the surgery he's more then willing to hand me off to Loma Linda's Head and Neck team.  I think I might talk to them just to get a second opinion and to feel them out.

On one hand I like that he want's to get on top of this.  On the other hand it's all happening so quickly.  It may be much because it's so fresh, but maybe after a few days I'll be more eager.  I don't know.  Just trying to keep calm and be positive.

Diagnosed With SCC

So, on Monday, August 22nd, I went in to get a Fine Needle Aspiration (FNA) with ultrasound of a lump on my neck.  It's just under the jaw on the right side of my neck.  I discovered this lump July 20th while getting ready for work that morning.  I didn't think much of it at first since I had no pain thinking it was an infection.  So I scheduled a physical for a month out since I was due for one and thought I would just wait til then to find out what it was.

Well, my concern got the best of me so I went to the Urgent Care the next day.  The doctor thought it could be an infection though I wasn't experiencing any other symptoms.  He gave me a 10-day course of antibiotics and told me that if it doesn't go away by then they'll to a CT scan.

Again I didn't want to wait around so I contacted my dentist thinking I might have an infection in my mouth or jaw.  I scheduled an appointment for that Monday morning, July 25th.

She did X-rays and an exam but couldn't find anything that would be causing this in my mouth.  She suggested I see an ENT.  So I looked up an ENT in the area and scheduled an appointment for that Wednesday.

On Wednesday, July 27th the ENT doctor examined my throat with an endoscope.  He didn’t see anything out of the ordinary internally.  He performed a FNA biopsy and ordered a CT scan of my throat with contrast.  I scheduled the CT scan for Tuesday, Aug. 2.  He told me to continue taking the antibiotics prescribed by the Urgent Care doctor.

On August 6th,  four days after having gone to get my CT scan, I received an email from the imaging company saying my results were available.  I logged into their website.  I pulled up my report and was excited to see the first few things were "normal" but realized that was just the beginning of the laundry list.  Eventually I got down to the bad part.  It said two of my lymph nodes were necrotic.  Didn't sound good but I didn't know exactly what that mean't.

I began doing research and was starting to believe that I might have lymphoma.  So I began researching that.  Needless to say it was pretty depressing, but I tried to remain optimistic until I spoke with my ENT doctor to get his professional opinion.  I thought to myself that if this is cancer that I'm relatively young and healthy and overall take pretty good care of myself.  If it is cancer, I can beat this.

So I called my ENT on Monday but they were closed.  I believe I left a message but then called again the next day and got someone.  I let them know I was interested in speaking with my doctor about my results.  They said that he has the results and would call me once he had a chance to review them.

I believe it was later on in that day he got back to me.  We had a conversation about the CT scan and said it really didn't show anything significant except the lymph nodes.  He said the biopsy he took was non-diagnostic and ordered another by another doctor that would do one with ultrasound to make sure they get the center of the mass.  He said if that came back negative for cancer then he would put me on a stronger antibiotics.  That gave me some hope that maybe this could be something else.

So, I kinda put my worries on the back burner til then.  No sense in worrying about something you know nothing about.

Well, Monday, August 22nd came.  Still holding on to the hope that this was something easily cured with antibiotics.  Unfortunately, that wasn't the case.  The doctor performed two FNAs and said she would be right back with the results.  I didn't actually want them that fast being that I had to drive into work that day.  I was hoping to get them the next day when I worked from home so I could process any bad news in a safe environment.  On the other hand I was so positive that this was nothing that I just wanted to get it over with.

She came back in a few minutes and let me know that the results came back positive for Squamous Cell Carcinoma (SCC).  I was kind of in shock at first and didn't really react much.  OK, I said, now what?  She said she wants to take a couple more samples to send out to the lab for more detailed results.  Once they get back in they'll send them to the referring ENT doctor and he'll contact me with a plan of action.  My wife and I asked a few more questions.  Then I just wanted to get out of their and on with my day.  It was going to be a long one.

I cried on and off on the way to work.  Of course I had to tell my boss because he knew I was going to be in late to go to this appointment and he asked.  Broke down then too.  I fought through that day tearing up from time to time in front of my co-workers and trying to duck out away from them to cover my sorrow.  After everyone left from my office I cried again, a lot.  I wrote my sister and brother an email and brought them up to speed.  I had to email them because I know if I had tried to call them I wouldn't be able to a conversation without choking up.

I was hoping I could put off telling my older son for a few days until I had gained some composure.  Unfortunately for me he asked me how the biopsy went before he went to bed.  I told him and was able to keep my composure pretty well.  He handled the news solemnly but with hope.

The next day I called my ENT.  I was told he has my results on his desk but won't be in until Friday.  They said they would have him call me as soon as he's had a chance to review them.  I didn't want to wait around for that either so I called an Oncologist's office the next day to try to get an appointment.  They didn't pick up so I left a voicemail.

I feel like I need to be more aggressive than cancer and get on top of this.  Besides, doing something makes me feel like I'm in the fight.  I will not give up on this.  I've always said that if I ever get a serious illness or injury that I'll fight my way through it.  I plan to keep my word, not only for myself but for my family.

I haven't told my younger, adolescent son yet.  I'm dreading that conversation.  I don't want his life to change.  I want it to be normal.  But things are going to change and he's going to see it.  I want him to know what's going on and be able to ask questions and know that he'll still be taken care of.

I decided to write this blog foremost to help me emotionally and mentally.  I've journaled before and it helps me to get things out and see them objectively, to process them and to gain direction.  I'm making them public so that others can read them and maybe gain something from them.  Whether it's inspiration, hope, information or even entertainment.  We're all destined to die, but I'm going to fight every inch of the way trying to live.