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.