It's chop time

I woke up to my face looking like the first picture here to the left.  Pretty sad when your only real goal in life is to grow a beard.  It just keeps coming out, more and more at a time so the decision has been made...it's time.  Time to grab the 'ol clippers and see what we could come up with.  The only option was to go friendly mutton chops which I affectionately call the English Sea Captain.  Have not seen my chin very often in the last 15 years, but I guess I will get used to the sight of it at some point.  Hopefully the beard will return, but right now it is time to play with some other styles.  
Radiation today was good.  I was worried when I walked in and they put the mask down over my face and clamped me down that they were going to have to make a new one.  They said they would run the x-rays and see how everything looked.  Everything worked out ok, and I don't think they will need to make me a new mask.  The bite-block I have in my mouth works well to position my lower jaw and so all should be well.  After radiation I met with my radiation oncologist for my weekly visit.  I am down about 6 lbs from the very beginning, so I get the usual talk about keeping my calories up and my hydration good and then I go along my merry way.  Again today my blood pressure was great and I have yet to have a fever through all of this, so I count myself lucky.  
I felt better today than I have in at least a week.  I don't know exactly what it is, but I hope that I can keep this going.  Been taking my anxiety pill every 8 hours, so maybe that has something to do with it, but I ate like crazy all day.  I probably took in about 2 days worth of calories, so tomorrow I might just take the day off.  Still losing my taste gradually, but I still have enough of it to enjoy the things that I am eating.  Definitely a big fan of sauces these days as I like what I eat to have a lot of moisture in it and be relatively soft.  The skin on my neck and parts of my face is starting to show the effects of the radiation.  It is turning red and will continue to get more and more red as the treatments continue.  
That is about it for now, the boys are going to the lake with my parents tomorrow, and then we will meet up with them on Friday when we get up there.  Going to take our old king size bed up to one of the houses there and just do some relaxing at the newly painted townhouse.

51.5% and 57.1%

I am now officially over halfway through my treatment schedule and I couldn't be more pleased with that fact.  Radiation was a breeze yesterday and today, but I am concerned that they are going to have to make me a new mask due to my ever disappearing beard.  Its pretty sad looking today, I am trying to moisturizing the skin underneath mainly on my chin as the skin is bothering me and seems to be dry and flaky.  Messing with the hair just makes it fall out, so I think I just need to let it go.  I think tomorrow is going to be the day of reckoning.  Stand alone 'stache with some bitchin' chops!  I just really hope that it grows back, but am resigned to the fact that my beard could very well be gone for good.  Met with the medical oncologist today before chemo and he said everything looks like it is going well...and gave me another prescription for an different anti-nausea medicine to try to see if it controls my nausea better.  He has be now taking Lorazepam and for those who don't know, this medication is used as a sedative.  Reading about it, I am hopeful that it helps with the mental aspect of not wanting to eat anything.  I think that my eating issues are more psychological and maybe this pill will help with that and also alleviate some of the other issues I have with the Zofran.  The first chemo nurse tried sticking my left had first, had trouble kept trying for awhile, then gave up.  She called in backup and I once again had an IV in my right hand.  Once that was done, everything went as was expected, although I was about an hour later today getting started so it seemed to go on forever.
I am really starting to struggle with the day to day task of keeping up enough calories entering my body and the mass water drinking is starting to become a chore.  My mouth is starting to be much more sensitive to temperature (hot and cold) and so I have to be careful with the temperature of things that I ingest.  I know I need to drink it, and I absolutely feel better when I drink it, so you think that would be a no-brainer.  I think that is where the mind games start creeping in.  I probably underestimated the amount that psychological issues would play in all of this.  It is non stop...I never get a break from it.  From when I get up until when I go to bed, it is a constant struggle to make sure that I do the things that I know I need to do to make this whole experience hopefully go as smoothly as possible.  Each day it becomes more difficult, but I must press on.  I need to do it for myself, but also for the other three people who are the most unfortunate to have to be around me the most.  Now that I am over halfway there I can definitely start the official countdown to completion.  I feel the road ahead will be hard, but I shall persevere and hopefully come out on the other side stronger and a better person.
I am typing this post in extreme comfort on my new adjustable bed.  For the last two years I have been sleeping on two bed wedges, one that elevates my upper body and one to elevate my legs.  They have deteriorated quite a bit and so today was the day that I went and got an adjustable base and new mattresses.  It is a split king (basically it is just two twin xl beds side by side), so we each have our own control.  Thus far it is super cool, I didn't opt for all the crazy features with the base, so I can just lift my upper body and also raise my legs.  My hope is that it helps me get better rest and allows more comfortable sleeping positions.  I shall now give it the full first night test run!  Goodnight!

NOW it begins

I have been pretty good (at least, in my opinion) about posting on a daily basis and I have purposefully left the weekends alone.  Saturday and Sunday I don't receive any treatment and I have used those two days to relax and recover at home.  I am posting today (Saturday) because I didn't do any writing yesterday.  The reason for that is because I was dealing with some rather severe discomfort and I spent the majority of the afternoon and evening curled up in the fetal position on my bed, dozing in and out of consciousness.  The nausea really hit me yesterday and I couldn't shake it.  Thus far, I have been able to do various things to either take my mind off of it or to make it somewhat bearable while I continue doing my daily activities.  Yesterday and today have been on a totally different level from what I have experienced thus far.  The bright side still is that I have yet to actually vomit and I can still find positions that lessen the overall impact of the most intense nausea sensations, but it has been getting considerably worse.  It is not really that it comes and goes either, it seems to just be a constant feeling of a sick/sour stomach that I can't completely get rid of.  Currently I can still only be up and moving around for a few minutes at a time before I have to sit or lay down to get the worst of the sensations to calm down.  I am forcing myself to eat (albeit not completely healthy AT ALL, but at least it is calories) but even drinking water has seemed like a daunting task the last couple of days.  I am still hopeful that I start to turn things around tomorrow and Monday, so I can go back into Tuesday feeling a little better and let the process begin again.
On to more pleasant thoughts...

2011 OBF

Currently going on in Portland, Oregon is the 26th annual Oregon Brewers Festival.  My brother and I (along with Robby) had the pleasure of attending this festival 2 years ago and it was an awesome beer fest.  I hope that once I am finally through with all of this crap and can move on with my life that we will again take up the task of meeting once a year at a beer festival somewhere to enjoy some beers and some good times.  The first picture is of our first day at the festival (before things took an interesting turn with a few too many full pours).  It was a great overall experience and I would recommend anyone with an interest in good beer to take a trip to Portland to experience one of the best beer cities in the US.
The other picture I feel I need to share today is of my beard in its glory days of late 2011.  This picture was from November of 2011, about a month before I got my initial diagnosis of squamous cell carcinoma.  I had been growing it out to win "Best Beard" in the Warrior Dash run outside of Austin (actually it was in Bastrop), but it was so hot and windy and dusty that we left the party after the run early and I missed out on the whole competition.  Oh well, it is still my best beard ever, so I thought I would share as I am still losing more and more of it every day.  I am definitely going to have to wear my MD Anderson id bracelet every time I go in to get treatment if I have to shave much of it off.  They will not know who I am when I first go in there.
Time to go try and eat some soup and hopefully get a few more calories in me before I fade out for the night.

Things that I could do without...

For starters, I would like to just skip Thursdays from here on out.  That would be totally ok with me if they did not happen for the next month or so.  The nausea seems to peak in the afternoon on Thursday and it is not pleasant at all.  Even with the medicine today, it was tough to deal with.  I still am trying to make myself eat through it, and the act of eating itself is not that bad, even when I am having fits with the nausea.  Most of the time it is the thought of food that really gets my stomach turning, but smells are still setting me off as well.  It seems to get worse as the day progresses, so this morning was ok...but right now it is not so good.  As long as I am sitting down, I can usually control it.  There are times when I have to close my eyes so as not to have any visual sensory input to help to get the feelings to pass.  Thus far, I have been successful in my attempts to not actually vomit, so here is to hoping that I keep that streak alive.
Radiation was again routine today, although their other machine was broken this morning so the schedule was somewhat out of whack.  Beard is still coming out if given outside assistance (pulling on it) on the left hand side, but it is not patchy enough yet to worry myself over it.  My skin underneath the beard, especially on my chin is bothering me, I don't know what that is about.  It is itchy and feels perhaps flaky?  Maybe it's a bad case of beardruff.  Whatever it is, it is slightly annoying.
Short post today, I am tired and ready to try to sleep a little tonight (hopefully).

Where to go from here?

The inevitable began to happen today, and it serves as a steadfast reminder that regardless of how I feel day in and day out, my body is being inundated with poison and there are just some things that you can't get away from.  This is one of those vanity issues that, in the long run, does not matter too much but I can't say my heart didn't break a little when it happened.  This morning, whilst engaged in the daily routine of showering and preparing for the day, I was rinsing out the shampoo from my lovely beard when I looked down to see my hands covered in hair.  That is correct, my beard is now coming out in very large amounts at the slightest tug.  Again, if this is the worst then so be it, but I really am sad to see it.  My only hope is that it is not permanent.  This is due to the radiation more than the chemo, so the left side of my face is and will be much more affected than my right.  I have already made the decision that if it starts to get very bad, I will be forced to go with either the friendly mutton chops or perhaps just a nice stand alone mustache for the remainder of my treatment.  Right now, I am in preservation mode, so I hope to maintain as little hair loss as possible but at the rate that I am losing it today, I don't know how long I can hold out.

This could be me very soon.

I took my nausea medicine all day today, and that has kept that under control.  I will still tend to get random sick feelings throughout the day and it still seems to be triggered by smells more than anything else.  The biggest issue still remains the fatigue and the tiredness all the time.  Granted it did not help that I was up way to late doing genealogy stuff, but I was still very tired today.  I got to visit with my radiation oncologist again today and that went well.  I actually like him more and more each time I have the chance to interact with him.  He does a very good job at giving the impression that he actually cares about what is going on, which helps put me at ease with everything when we are discussing the treatment.  He does think that by this time next week, I will have some worsening side effects and that I just need to stay on top of pain levels and eating.  Roger that.  
Bowen wanted to meet for lunch, so we all met at Fuddruckers for a burger, and that was a nice treat.  He had spent the morning mowing the yard for me, so he definitely earned his cheeseburger today.  Also, an unexpected surprise awaited me when I got home from work today and that was some wonderful artwork imported from San Francisco along with some cookies both produced masterfully by my youngest niece, Natalie, along with some help from her parents (thanks a bunch David and Ginny).

It's upside down, but still easy enough to interpret.

Brand new addiction

Today was round 3 for the chemo along with my usual dose of radiation.  Every day at radiation, I see the same few people that are all waiting around for their treatments and we chat about our general experiences and talk very candidly about what we are all going through.  It is actually a good thing for me every day to hear what others are going through and to find some common ground with people that are dealing with the same issues and concerns and treatments.  It is a very different world that you step in to when someone tells you that you have cancer both for you individually, but also for all those people that are close to you.  After radiation, I came back out to the waiting room and sat down with the group that I talk to everyday and we chatted about various topics, including our original diagnosis and the shock that you receive when random doctor #1 enters the room to tell you that the biopsy came back as cancer and then launches into what all they are going to do about it, when it is hard to advance your mind past the sucker-punch that you just received.  Jessica had told them that I am writing about everything in a daily blog and we talked about that a little, mainly that this is my one outlet and that I would much rather do this than actually talk about it.  I will say that everyone I have talked with is very positive about the blog and consensus seems to be that it is a good thing for me to be doing and that is nice to hear.  Anyway, along these same lines, we got to talking about the reaction people have when you start talking about all the things that you are going through.  There is usually a moment where you can tell the eyes begin to glaze over and the panicked look on their face becomes more and more evident and then you realize that they have no idea what to say in this situation and are frantically trying to come up with something positive to say.  But what is there to say?  It goes back to what I was trying to say yesterday with my reasoning for writing this blog.  I do not want sympathy nor am I looking for anyone to feel sorry for me or worry about me.  I want to present what is going on, the things that I am struggling with and what I am experiencing and thinking about on a daily basis.  I probably veered off course here again, so I will try to remain on topic.  The main point here is that I enjoy my chats in the morning with my cancer peeps, it is definitely nice to talk to others who have to endure the same (an sometimes worse) types of treatment.
Felt good today after chemo, I am still eating well.  We met up with mom and dad at Papadeaux for dinner and that was awesome, thank you Boppy!  I have to take my nausea medicine about every 8 hours, and I could definitely tell this evening when it was time for another pill.  I could take one at 5:30 and by that point I would say that it was just about time.  I started to feel nauseous and light headed around 5, but the pill begins to help me fairly quickly after I take it.  My weight is still right around where I started, and my blood pressure is rock solid.  That is one good side effect from having to see doctors ALL THE TIME now.  Doctors used to always tell me my blood pressure was somewhat high, and I would tell them that it was due to my extreme aversion to being in the doctors office.  Now it has just become routine and my blood pressure is usually right where it needs to be.  If I am going in for something that I am worried about, it can elevate, but these days I don't worry about too much.  
Now for a quick discussion of my new addiction, thanks to my mother.  She had a bunch of genealogy stuff laid out when I went to her house today so I started looking through it all.  Now I am hooked.  I now have an every increasing family tree for us that I am working on and already making some good progress.  We are all the way back to the early 1800's on my mothers maternal side of the family and I have some good leads on a lot of missing pieces.  I have always been somewhat interested in familial lineage, but sitting down and looking at it and then starting to write down names and dates makes me want to research more and more.  Speaking of that, I took a break to write this entry and now I think it is time to return to my family tree.

A case of the Mondays

The bell at MD Anderson

Now two weeks in, I can say that it will be very nice to have a two day respite from treatments on the weekends.  I am not much of a late sleeper, never have been, but it is still nice to stay in bed until 8 am for a couple of days as I go through this.  It also helped this past weekend to have a couple things to do that involved people that I truly enjoy being around.  Saturday was the local reception for Robby and Shelley to celebrate their marriage with some people who were not able to attend the actual ceremony in Grand Cayman the first week of May.  Robby brewed 15 gallons of beer for the reception and I added 10 of my own and I think everyone had a great time.  While not able to sample these glorious libations, I did have a great time and I truly cherish the time I get to spend with this group of friends that have been together for 30 (or so) years.
As far as side effects go, the main issue right now is just extreme tiredness.  I don't really have energy to do much at all.  Last week at this time, I felt much better than I do today.  I suppose they know what they are talking about when they speak of the cumulative effects as I go through treatment.  My mouth is also experiencing worsening side effects.  It is definitely drying out and tends to bother me more as I am forced to talk more.  The left side of my throat is getting progressively more sore as the days wear on.  There is now definite pain whenever I swallow, but it is only on the left hand side.  I am also starting to see why they keep telling me to do jaw exercises every day to keep my range of jaw motion at an acceptable level.  All the muscles on the left side of my neck and face are tightening up and are increasingly more difficult to move.  The left half of my tongue where my original surgery is also starting to feel a little odd.  It mainly tingles, but the left base of it is also becoming painful when I move my tongue.  My jawline is starting itch like crazy too, but that could be attributed to a bad case of the beard lice.  Rereading all of that, I want to make sure that I point out that I am not complaining at all about these things.  There are many people that have had it (and will continue to have it) far worse than I do.  I merely wish to relay these experiences as I go through them to people who care to read about them, and have a record that I can go back through if I so choose.

Looking ahead, I have chemo session #3 tomorrow along with more radiation and a blood draw first thing in the morning.  I am curious to see my blood analysis results from last week and see how they compare to the original results.  My parting picture today is of the bell that I still have yet to ship to my uncle, a bell which resided in Cat Spring, TX for all the years that I can remember and will one day soon make its way up to Omak.