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."

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.

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.

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.