Final Stretch

I'm in the final stretch of treatment.  This week I have four more radiation treatments ending on Thursday and my last two chemo treatments on Thursday and Friday.  The pain in my mouth and throat really hit me hard last Thursday and Friday, yesterday and today it's even worse.  I had to up my dosage of Hydrocodone to 20 ml which I'm taking three times a day.  It's cutting the pain overall pretty good, but there's still spots in my mouth that hurt whenever I try to drink something.

The ringing in my ear from the Cisplatin seemed to be almost gone when I woke up his morning.  Since then it's returned but it seems quieter.  I shook some keys yesterday and they seemed to make a flat noise, different from how they usually sound.  I'm not sure if that's from the Cisplatin or if they've always sounded like that.  I which I would have gotten my ears checked before beginning treatment so I could establish a baseline for hearing loss.

My g-tube has been fine.  I picked up the lotion my dermatologist prescribed for the rash and I've been applying it a couple times a day.  It's helped with the itching and my skin has cleared up around it.  My weight had dropped to 146 pounds but I'm back up to 150 now.  I also ordered some dumbbells online to that I can start lifting some weights and get some muscle tone back.  I'm excited to start lifting again.

So, I just need to keep my pain under control, make it through this week of treatments then start focusing on healing.  Really excited about being done.

Day 16, 12/35 days of Radiation

Pain in my throat and mouth has been pretty high the last couple days.  This morning I spoke with my doctor about this and he said it will probably be like this the duration of treatment and may even get worse.  Right now I'm taking liquid Tylenol which is only taking the edge off.  I'm only taking it a couple times a day to avoid the negative affects of taking pain medicine for an extended period.  Likewise I want to hold off on taking something stronger as long as possible.

The pain really isn't too bad as long as I don't talk, cough, yawn, sneeze or try to open my mouth too much.  It's very similar to how my throat felt after my surgeries, but this will be lasting 5+ weeks instead of the 2 weeks of recovery post op.

I've pretty much switched to using my g-tube for nutrition.  Yesterday I was able to get 5 cans down it.  The bolus syringe is really a PITA.  I have to hold it the whole time and if I relax it will pop out of the tube making a mess.  I'm also having to constantly refill it because it only holds 60 ml and a can of formula is about 240 ml.  I have to apply a steady pressure so it goes in, but not too fast or else it might cause me to get sick.  It'll be nice to switch to a gravity bag so I can just fill it once and let it drain.  I'll have to follow-up with my primary doctor tomorrow to make sure the order went through.  If not I'll just order some online and pay for them out-of-pocket.

I saw my dermatologist this morning about the contact dermatitis around my g-tube.  He confirmed does look like classic contact dermatitis.  He gave me a better ointment to put on it.  It looks like it's healing so I'm not that worried about it anymore.

This is a new dermatologist that saw me out of the same office I usually go to.  He was super nice and was very compassionate about what I'm going through.  It's always nice to get a doctor that really seems interested in helping you.

Let's see, what else.  Oh yes!  The ringing in my ears has all but gone away.  It's very faint now and I barely notice it anymore.  That's a relief.  That took almost two weeks to go away.  Hopefully next time it won't last as long.

That's about it.  I keep thinking about all the other people made it through this and it helps give me the confidence that I can make it too.  My radiation nurse did tell me this morning that the treatment for throat cancer is one of the most difficult to endure.  On the bright side it's highly curable.  So, in the end, it should all be worth it.

Day 10, 8/35 days of Radiation

Starting to feel more like normal today.  I felt less nauseous.  Big plus!  It was still there but I didn't need to take any medication and I was able to eat pretty well, though nowhere near normal.  Certain things still made me feel like I wanted to hurl though.

Speaking of medication, I happen to read the script info on the Ativan that I was prescribed yesterday for nausea and the first line reads, "Taking [Ativan] with opioid medications such as codine or hydrocodone (which I also have) may increase your risk of very serious side effects, including death."  Wow! Glad I read that!  That's one of the reasons I don't like taking prescription medications; the side effects are often more profound than the benefits especially when used with other medications.  Lesson learned to read the prescription info on everything.  So, I'll probably be staying away from that, especially when things get worse and I need to be on the pain meds.

My weight stayed the same over the last couple days.  I'm now 149.2.  Hopefully with the Cisplatin leaving my system and my nausea diminishing I'll be able to eat a lot more.  I'm going to use the next couple weeks before my next chemo treatment to eat as much as possible to fortify myself for the next round.  Problem is that food tastes very different now.  Very bland for the most part, if they're not making me sick.  The only thing still enjoyable is fruit.  My wife bought some Kiwi's that are just saving me right now.  They're so perfectly ripe and tasty.  Strawberries are also incredibly good.  I feel like I'm learning what foods I like and dislike all over again.

The dryness in my mouth hasn't really changed much.  If anything it might have even gotten a little better.  However the tightness around my scar seems more prominent.  I think the metallic taste in my mouth is more pronounced as well.

My energy level today is feeling more back to normal.  I feel more like my old self again.  A lot more active and engaging.  So it seems like there's a cycle where I'll feel like shit for the five days following chemo and on the sixth start feeling better.  I'm glad I'm not going to feel like that the whole duration of treatment.  At least I'm hopeful I won't.

The ringing in my ears seemed less bothersome today.  I don't know if I just didn't notice it or if it actually decreased.  Right now it seems rather loud, so I guess I'll wait and see what it's like tomorrow.  I do want to mention that yesterday at work, when I was outside and cars would pass by I could hear their wheels make a noise I never really noticed before.  Like I could hear the spokes cutting through the air.  It was very odd, but that's the only thing I've noticed out of the ordinary with my hearing.

Last but definitely not least is sleep.  I slept very well last night  My god I needed that.  It may be the reason today was so positive.  So, without further ado, I'm off to bed looking forward to yet another good nights rest.  Onward and upward!

Day 9 (Since Beginning Treatment), 7/35 days of Radiation

Today was pretty good.  After all...it's hump-daaaaaay!

G-tube is getting less of an annoyance allowing me to sleep pretty good last night.  I did try to put a protein drink down it last night before bed since I was pretty nauseous yesterday and didn't get the calories I should have.  My mistake was that I let the weirdness mess with my head and I started to feel feint so I had to stop before finishing it.  I think I'm going to wait until the nutritionist/nurse comes out and gives me a proper demonstration so I can put my concerns behind me.

I've also developed a rash around it.  I'll save you the photos.  Suffice it to say it's not normal.  I do have certain skin allergies, mostly to adhesive bandages and certain tapes.  I had a reaction to the tape they used to secure the gauze to the site after surgery but it wasn't touching the area that is now broken out.  I showed one of my nurses Monday and again today who in turn had my radiation oncologist take a look at it.  The nurse also called the GI department that did the surgery and they, like my doctor, just suggested I put some antibiotic ointment on it.  My doctor said to try that for the next couple days and show him again on Friday.

I also stopped by my oncologist's office today and spoke with a nurse there about my nausea and the ringing in my ears.  She spoke with my oncologist and they prescribed me another anti-nausea medication, so I'll try that.  I've got to get on top of this to prevent further weight loss.  I know I'm below 150 now.  My nurse noticed my weight loss today too and said, "No more." I told her about the nausea but she said I just had to suck it down.  Thing is I'm afraid if I do that I'll throw it up and if that happens it will be either incredibly painful because of the g-tube or it will dislodge the g-tube and I'll have to go back and get it reinserted, or both.  So hopefully the new anti-nausea medicine will work and I can start eating normal, or at least somewhat normal.

Actually, speaking of nausea, today has been pretty good for that too.  I woke up hungry so decided to have a bowel of cereal with strawberries.  I was able to finish the berries but not the cereal.  Then after radiation I was pretty nauseous.  I asked my radiation oncologist and radiation tech about nausea after radiation and they said radiation shouldn't cause nausea.  So afterwards, on the way to work, I ate a handful of saltine crackers and drank water and felt pretty good.  For lunch I had some curry chicken and rice and a bunch of fruit (strawberries, kiwi, raspberries) I packed for lunch.  All of which I had little to no problem eating.  I did try to add some carrots to the mix for lunch, but that was too much so I had to stop.

On the way home I was listening to the Star Wars Force Awakens audio book.  I got to the place where Rey and Finn meet Han Solo for the first time.  That got me thinking of Ham Salad from Space Balls which gave me cravings for macaroni salad.  So on the way home I picked up some macaroni salad and chicken sausage.  Unfortunately when I was able to finally enjoy it at home it wasn't as good as I imagined it being, but I was able to eat most of it which is a win.

As for the ringing in my ears it's been happening at various, annoying levels ever since my last chemo treatment.  I mentioned it to my oncologist twice and then again today to the nurse.  They both asked if I have experienced any other changes in hearing or pain which I haven't.  So they just suggested I monitor it and let them know if it gets worse.  However, the nurse said it could last a week or so.  If it's still happening by the time I get my next treatment they'll probably make an adjustment.

Those are the worst things I've experienced so far.  Aside from that I'm starting to have some dryness in my mouth and I'm feeling some tightness on the right side of my neck.  I'm not sure if that's from the radiation or the scar from my neck dissection.

I've just trying to stay focused on the end game today and distracting myself with work and making plans for the future.  My older son just bought a motorcycle and I think of all the fun we'll have riding together after all this is over.  Amazing how distractions can take your mind off the crap you're traveling through.

Having Cancer Is Like 'Lord of the Rings'

I was thinking of the "battle with cancer" metaphor and now that I'm actually experiencing the "battle" I'm realizing that metaphor doesn't really work with me.  Sure I'm fighting cancer and it is a battle but in such a fight you would imagine your enemy to be more reactive, more of an active adversary counter-attacking as much as defending.  But it's really not like that.

So I started to try to think of other metaphors that might relate better to what cancer patients go through so that non-cancer patients could understand what this cancer-thing is all about.  After all, when I used to hear about people battling cancer I thought cancer was dealing all the heavy blows.  Turns out cancer is not much more than an annoying intruder that just won't go away.  Yes, it can eventually kill you but in the beginning it's just a bunch of cells replicating uncontrollably.  Which is bad but doesn't necessarily cause a lot of symptoms.

The real battle is dealing with all the weapons that you use to try to get rid of this passive-aggressive intruder.  Maybe a better metaphor is how Wil E. Coyote tries to get rid of the Road Runner by using all those over-top-weapons, only to be thwarted in the end.  Obviously that analogy isn't suitable since we can't have the Road Runner winning every time.

Then I thought that there must be some others out there that someone else has come up with.  Why re-invent the wheel?  So I did a search and the first result talked about how some see cancer as a journey rather than a battle.  While reading the article it dawned on me that trying to rid myself of cancer is much like Frodo's journey in 'Lord of the Rings'.  It's an extremely long movie but I'll keep my comparison brief.

You start off with finding you have The Ring (cancer) and that it's incredibly powerful and destructive which, as a result, needs to be destroyed.  You discover that it's not easily destroyed and the only means of doing so is that you, yourself must deliver it to Mount Doom (radiation/chemo) which itself is incredibly powerful and destructive and could kill you.

So you must take this journey of trials and tribulations (these can be anything from medical personnel to insurance, from side-effects to daily survival) to deliver The Ring to it's destruction.  You start the journey with Hobbits (family) and other races from Middle Earth (friends).  Along the way they lend you various levels of support and help you along your journey, but ultimately you must carry the burden, much of the time, alone.

You go though this journey never really knowing if you're on the right path or if you'll ever make it, but you have to keep going because the whole world (your world) depends on it.  Through all this you learn who your true friends and family are and even more so who you are and what you're made of.

One thing that's always there with you, by your side, is Sam (hope).  Hope of another day, of another month of another year.  To spend on your family, with your friends, your lover.  To see another sunrise or sunset and to live another day.

So you keep going, not sure what the next day will bring.  Whether it be one step closer to the end or your end.  Then, if you make it to the end, and (!!spoiler alert!!) complete your quest to Mount Doom and destroy The Ring, you'll have to escape it's aftermath.

Well, that pretty much sums it up for me in a nutshell.  To there and back again.

--

‘It is not the strength of the body, but the strength of the spirit.’ – J.R.R. Tolkien

Meeting With New Oncologist, Friday Dec. 30, 2016

I met with my new oncologist last Friday to go over treatment.  I chose to change oncologists because this one was a lot closer to home, right next door to my radiation oncologist and has a working relationship with my other doctors.

After going through my history and a brief exam we discussed treatment.  I told him I was already set to start radiation and just need to get my chemo plan so that they could be started in tandem.  He recommended Cisplatin which would be administered via IV.  I asked him about Erbitux being that was what my ENT recommended.  He told me that he didn't feel there was enough evidence of it being as effective as Cisplatin.  That was kind of a bummer to me because I was looking forward to a more mild form of chemotherapy with fewer side effects.  However, I also want the most effective treatment available.  I want this to be done and done for good.  So I agreed to proceed with Cisplatin.

We went over the treatment and side effects and then I had another meeting with the nurse manager detailing those side effects.  Nausea and vomiting, of course.  Sensitivity to sun, loss of hair and appetite, diarrhea, constipation, neuropathy.  They gave me guidelines on what to do depending on what I experience and at what point to call them.

I was also told this used to cause kidney damage, back in the 70's, until they discovered that that could be averted with substantial hydration.  They're going to hydrate me during the treatments but prior to and after I have to drink 96 oz. of water a day.  I'm not a big water drinker to begin with so that much water is going to be a challenge.  I get to a certain point and I just start feeling water-logged.  Anyway, it's got to be done.  I certainly don't want kidney damage.

I'm going to be doing 3 sessions spaced 3 weeks apart.  Each session is 2 days, 4 hours per day.  I start this Thursday and Friday, Jan. 5th & 6th.  I'm going to try and work from the chemo room otherwise I'd just be sitting around for 4 hours.  I already checked and they have wifi and power and my boss OK'd it.  So we'll see how it goes.

That meeting was pretty overwhelming.  I was really hoping for the Erbitux, that and everything I have to do on top of the chemo as far as monitoring my bodily functions was a bit much.  But right now I'm feeling optimistic.

I did a test run on whether I could drink that much water today and I succeeded. I just keep thinking about all the people who went through this and not only did it but are now cured.  I keep focusing on positive thoughts.  I just have to make it through this and I'll be cured.  I can do this!

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!! ;)

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.

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.