A Progress Report from Beagledad

[P=L tonsil, S= 2 nodes in lymph.  TORS with MRND.  4 of 5 negative margins, + on deep margin.  This was followed up by 7 Cisplatin chemos and 33 bilateral IMRT rads 60/54g]

Good morning to you all!  I am happy to report that last Friday, Feb 26th, I completed my last radiation treatment and am now on Day 6 of Recovery.  WOOHOO!!!

For noobs or other folks searching for information, you are in the right spot.  I got through SO MUCH better with the guidance and encouragement from these "veterans" here.  

So I want to add my two cents, as I am now officially in "vet" status.  

I have done it all.  TORS tonsillectomy, Modified Radical Neck Dissection.  7 Cisplatin chemos.  33 IMRT radiation treatments with mask. 

One thing above ALL OTHERS I found to be valid was when we vets say, "everyone's experience is different", take that to heart.  Be prepared for the worst, and smile when you escape some of them.  

None of us have the time to read every post by every patient.  But there was one thing I did not read about that I wished I had known so I could have prepared for it.  Hate to go "potty" on this forum, but it was the constipation issue.  All other aspects, the mask, the mucous, the skin burns, the emotions...all of that I had prepared for quite well thanks to the folks here (Yeah I am looking at YOU, Piplilly ...thanks for helping me keeop my baby-soft skin!).  I had the oitments, the bandages, the puddings, jellos, eggs, broths, lemon drops, and more.  I had asked the doctors about all the expectations and received pain and other meds before they were ever needed.  The people that spend their time on this forum are truly helpful folks.  I thank all you guys, Motorcycle, Russ, Mattie and Wildman ... and so many more.  Trust each of these folks, but remember that cardinal rule .... EVERYONE'S cancer and treatment is different.  

Given that, let me go deeper into the constipation issue.  I developed this after my third chemo.  But, since I was not aware of it nor preapared for it, I did not understand what I was dealing with.  Because of this lack of preparation, it took a full 3 weeks to get it under control .... a VERY tough 3 weeks.  It wasn't that I simnply "couldn't poop", it was that I was not even aware that was happening.  I chalked it up to not eating solid foods.  After awhile, though, there was no place for my belly contents to go, except out the hole created by my Gtube.  So I lacked ANY desire to eat...not due to throat irritation, but due to full belly and discomfort that came from that ALL DAY EVERY DAY.  I finally told the Rads doc, look, Doc, I gotta make a choice here... hydration or nutrition, I choose hydration.  By the time we had finally developed a good laxative program, I was almost 3 week in to this daily discomfort.  To be honest, it really never fully went away until after my last chemo.  We HNC patients have enough to deal with between burned skin, swollen and irritated throats, and dry mouth, we really, REALLY, do not need bloatied and uncomfy bellies.

So know that this is AN ISSUE .. or was for THIS patient ... and be prepared by discussing this with your chemo or rad docs during the early weeks when chemo is still not causing you any serious discomfort.  

All that being said .. here is a RAY OF HOPE.  

Everyone..I mean every-one....in this forum that I have read or with whom I have communicated -- a full 100% -- have experienced severe dry mouth, loss of saliva, loss of taste, and found the week following last radiation to be "the worst" week of their entire ordeal.  And you may, too.  So here is that Ray ... I did not.  This is tough to talk about because it sounds like bragging, and others may feel, "how did HE get so lucky?" I do not mean it in any other fashion other than to give you hope that maybe you might fare as I did.  This is a derivative of "everyone's experience is different".  I NEVER lost my saliva.  My taste was/is "muted" but I can still taste chocolate, chicken, eggs, and other things..I cannot tell you a long list because I had a very, very short list of things I tried or managed to consume.  I even had a canned peach slice a few weeks ago and could faintly taste the peach flavor.  My mouth would get dry at night but thanks to "Radiation Hack #3" (see forum list of topics) I was able to help myself in that area with a small piece of surgical tape.  (I strongly recommend you go read my 3 Radiation Hacks).  

The thing that worried or concerned me the most, though, was that Week After.  Man, I felt, how much WORSE can things be??????  By final week of rads, I was exhausted and felt like Death wamred over very single day...and my doctors and Forum friends were all warning me that next week was going to be even worse.  Oh my.  

I do not know why ...grace of God?  Great medical team?  Positive attitude?  Maybe I have some unicorn blood in me?  I dunno ... but by Day 3 of Week After I was already feeling better. Each day since then my throat swelling has reduced, my pain is almost gone, and my energy levels and attentiveness are rising.  I quit using my feeding tube for anything yesterday (Day 5) and am now eating and drinking 100% orally.  Still not eating A LOT, as the food still irritates the throat a bit, but it is all going through the pie hole now.  Ginger ale helps.

So there may be a few rainbows in YOUR treatment future as well.

Moral of the story ...read and LISTEN to us vets ... BE PREPARED.  We have lived it, been through it .. no one here is going to give you false hope nor bad advice.  We all want to see you have a better journey throgh this than we did.  Communicate with us, share with us, let us be a part of your success story.  By the way, if you have not yet read Piplillys 3 part skin solution...go find it.  I did it religiously every day.  1 bottle of each is enough; mine are still half full!  

Good luck and stay strong.  

To those that went before me ... thank you.  Each of you.  I was uber-prepared because of you guys and your stories.  I'll forever consider you all my friends.

Don (Beagledad)