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.

2 for 1

I did not get around to writing anything yesterday, I have been pretty tired the last couple of days.  Robby and Shelley came out for dinner on Thursday and so we were busy all evening and by the time they left, I was exhausted and went straight to bed (after doing my fluoride treatment, of course).  I have been taking the nausea pills every eight hours as they instructed me and that seems to control it pretty well thus far.  The pill bottle does have a warning about the medicine possibly causing headaches, and in my case I would say that it definitely does cause them.  I guess I can choose between being nauseous or having a raging headache.  At this point I will go with the headache.
I did get some pictures of me laid out on the machine on Thursday, and I will include them with this entry.  The treatments yesterday and today were uneventful, I am usually on the table by 8:30 and in my truck now by 9:05 am.  The MD facility where I am having my treatments has this bell hanging in the hallway and each person undergoing treatment gets to ring the bell on the last day after their last treatment for all to hear.  I have seen one lady ring it, I think on my very first day and then today another guy got to ring it.  It must be such a relief to complete the course of treatment and finally get to that point and  am sure that it must feel good to do it.
I think my taste may be starting to fade now.  Everything I have eaten today has seemed bland and somewhat tasteless, but I am getting more sensitive to the temperature of food.  I had a great appetite for the majority of today, so I am still eating when I feel like it, there is just not as much enjoyment with it as I don't experience my usual taste sensations.  My mouth is also beginning to dry out more and more and the left side of my throat is definitely starting to bother me.  Things are definitely changing inside my mouth, so I need to make sure that I really stay on top of my mouth care.  Overall, I still fell decent but today I was just plain tired.  I woke up feeling tired and it continued throughout the day and when I got home from work, I went straight to my bed and took a nap.  I am definitely looking forward to not having to go in for treatments over the weekend and hopefully feeling a little better as well.
As of right now, I just made this blog public.  That means no need to log in or need for gmail accounts, it is now accessible to anyone.  The main reason for that is to try out the follow by email gadget that is now located in the upper right corner of the blog.  In theory, you can enter your email address in that box and click submit and you will get a notification email whenever I add new posts.  I have yet to try it to verify that it works, but that is the theory behind it.  

A-O River!

And then there was some mild discomfort...

My water cup

I am currently experiencing what I would say is my first real good bout of chemo induced nausea.  I had been doing pretty well today, but on the way home from work I started to feel quite queasy.  This morning, in the shower, i thought I felt what could be considered the twinges of a stomach issue so I went ahead and took my nausea pill when I got out.  Every 8 hours is how often I can take them and I had only taken one last week and I think it was also on Wednesday.  I also treated myself to a whole milk whey protein shake this morning for breakfast, so that could have been the cause of the nausea to begin with.  I bought a gallon of whole milk for two reasons...1. I absolutely love whole milk, it is like drinking cream, and 2. I thought I might start struggling to eat enough and the nutritionist/dietitian that I met with recommended using whole milk when I make my protein drinks.  My drive home from work was about 9 hours after my morning pill, so either that wore off, or my nausea just took a while to set in.  I took another pill as soon as I got home and I am currently laying in bed, supported by my two trusty bed wedges, as I type this post.  I couldn't eat much for lunch, but I did try.  I had some leftover tortellini and alfredo sauce that I thought would be a great thing to eat, but it just wasn't happening today.  I did eat a whole Fuji apple and then followed that with some peanut M&M's, so I would say that was one heck of a balanced meal.  I don't think that I have mentioned my water ration that I have put myself on while I go through this adventure, so now might be a good time to get in to it.  The recommended normal water intake for the average person per day is 8-8oz glasses.  That comes out to be 64 oz of water in a 24 hour period, which also equates to 1/2 a gallon of water.  My most recent hospital stay provided me with a very nice, insulated jug of a water cup, complete with lid and straw and it has been my very best friend since I was release a few weeks ago.  It holds 32 oz of water at a time, and I currently fill it 4 to 6 times per day.  That comes out to anywhere between 1 and 1.5 gallons of water per day that I am consuming.  They told me to drink plenty of water, so that is one controllable factor in this treatment I am definitely going to hold up on.
Radiation went smoothly, enough so that I totally forgot to meet with my doctor afterwards as I am supposed to do on Wednesdays.  I was already at work and was clearing all of my reminders when I noticed the one reminding me to meet with the doctor.  Oh well...I would imagine that it probably happens routinely around there as people come and go and get used to their usual routines.  A quick email later, I was rescheduled to meet with the doctor tomorrow instead, and since my doctor is not even here this week it will be with a substitute doc anyway.  I finally took a picture of my mask to share, with an assist by the lovely Linda, one of my radiation techs.  She sets me up and runs the machine every morning when I come in.  Tomorrow she is going to take a picture for me when I am all strapped in to the table and ready for treatment so that will be another good one to pass along.

And now for something that I get a kick out of...

I was perusing my blood laboratory results from last week (from my first day of chemo, prior to treatment), just looking at all the results.  The document lists a bunch of different chemical analyses from the blood samples they took and gives my measured value and also lists the normal value range.  So I am looking through all the different things that they are measuring and I come to on called "uric acid serum".  Mine is highlighted in red and lists it as being high for that particular substance.  I wondered exactly what this was and why mine would be high, so I did as any other well rounded researcher would and google searched for uric acid serum.  The very first result led me to a definition and some possible causes for a high reading.  

I leave you with the following excerpt from the random medical website I found and I also challenge you to really dig deep in your knowledge of me to guess which of the 6 listed items you think my high uric acid level could be attributed to...

"Uric acid is a chemical created when the body breaks down substances called purines. Purines are found in some foods and drinks, such as liver, anchovies, mackerel, dried beans and peas and beer."

Chemosocks

Chemosocks

A big thanks to Kristina and her two girls for my new loungewear and CHEMOSOCKS!  Three new pairs of awesomely comfortable socks that I can wear during my three hour chemo sessions.  I kicked it off today with the blue pair and I must say they made the day go pretty well.  I was in and out of radiation in about the new normal time, 20 minutes or so.  Before that, I had blood drawn for analysis and that, too, went very smoothly.  The guy that sticks me for the blood draw is good at what he does and it goes very quickly.  Two vials of blood and I was done.  I logged in to my MD Anderson account and checked my blood results from last week.  It was interesting to read through the various results on blood chemistry and then google what it means.  I had some things that were high and some low, but most indicators were in the normal range.  I am looking forward to talking with the medical oncologist about what it all means and also see how the numbers change over the weeks as I continue with treatment.  
I felt great this morning and had a whey protein and milk breakfast and then followed that with some bacon and eggs.  I felt like that was a good start to the day and I am trying to to live by the recommendation of when you feel like you can eat and want to eat, then eat.  It was good to have a solid breakfast and maybe that can help me delay my chemo response or perhaps lessen it.  
Once complete with bloodwork and radiation, it was time to head upstairs and check in for chemo.  After a short wait, they called my name and I was off to get my temperature, blood pressure, and weight checked and then head off to my assigned room.  I was in room 4 today, which was a mirrored setup of the room I was in last week.  Still a comfortable setup.  I had a different nurse today than last week, I didn't even see the nurse I had last week.  She put the IV in the top of my right hand, which I was not a big fan of, but it definitely worked to get everything into my body.  Again this week, there was some nausea IV medicine and a steroid prior to the Cisplatin.  I think I felt less this week than last when they finally did run the chemo drug through me.  I would way that I felt a little more tired after it was administered, but that could just be me over thinking the whole situation.  Nothing really new to mention now that I have completed two full chemo treatments.  I have not experienced much nausea this afternoon or evening and I am still able to eat well.  I still actually feel pretty good this evening, so I hope that holds true for the rest of the week.

Surgery #1

Me, prior to any surgery

My ENT surgeon painted a clear and precise portrait...surgical removal of the primary tumor site along with a neck dissection to remove the majority of lymph nodes in my neck to check for any signs of disease infiltration.  Sounds simple enough.  There were many scans and tests performed on me in the remarkably few days between diagnosis and surgery, and no additional part of my body showed any evidence of the disease.  We had a plan and everything seemed to be going as well as it could, all things considered.  
The path was clear, surgery followed by radiation and then move on down the road.  Then we met with the radiation oncologist that we were referred to by my ENT surgeon.  He was convinced that my disease was much more advanced and that I needed to have a much more aggressive surgical approach and recommended I go see an ENT surgeon with MD Anderson.  So now I had two doctors who disagreed about my treatment path and they basically told me it was up to me to pick which way I wanted to go.  Luckily, all those years I spent in medical school prepared me well for the situation that I now found myself.  I met with one more radiation oncologist just to get another opinion, and after that I made the final decision on which direction I would go.  I ended up going with my original ENT surgeons plan and closed the door on any further discussions about possible alternatives.

Post-surgery...day 1

The surgery itself was a partial glossectomy along with a neck dissection.  I remember being very nervous going in to that first surgery and did not know what exactly to expect.  The most memorable part of that day was arriving at the hospital that morning and witnessing my father driving in to the parking lot.  I recognized his truck but was curious as to who it was that was driving.  At the time of my surgery, I was 34 years old.  For all 34 of those years, my father possessed a wonderful full beard.  He showed up that morning clean shaven for the first time in 40 something years.  That was awesome meant more to me than anyone will ever know.  
The first surgery went well, I think I left the hospital on the third day after surgery.  The worst part of the recovery was the unbelievably uncomfortable neck drains that I had on each side of my neck.  There was another cool adventure to be had when I went in to my doctors office to have the drains removed.  The process of drain removal is not that complicated...the stitches holding the drain in my neck are cut, and the tube is pulled out.  I did not realize, however, just how long these tubes were that had been in my neck.  They went in around my shoulder and apparently meandered around my neck and ended up at my ear.  The physician's assistant was the one who drew the short straw and had to remove them, and she got quite a show.  She pulled the first one out, it was the one on my left side, and I felt somewhat queasy when I could feel something around my ear move as she pulled on the tube.  That one came out, but I think she could tell by the look on my face that it was not a pleasant feeling and so she asked if I wanted to wait a while before pulling the next one.  I told her to just go ahead and get the other drain out of my damn neck so this whole thing could be done.  It just so happened that Leslye had also drawn the short straw and she was the one that took me to this appointment and was sitting in a chair next to where I was.  I remember the right side drain coming out, and I remember sitting there an looking over at Leslye while the PA was asking me if I was ok.  The last thing I remember was a feeling of not being in control of my own body and reaching out for Leslye as she stood next to me.  At the time I was sitting down, but the next thing I remember I was lying on my back with the two of them leaning over me with rather concerned looks on their faces.  Apparently I had just passed out after the neck drains were removed.  All I remember is bright light and someone standing beside me comforting me in a way that made me very calm.  The scene around me in reality was not calm at all.  The PA threw open the door to the room we were in and started yelling at the nurses to call 911 and get the crash cart.  She then started to beat the living crap out of my chest (I guess in an attempt to wake me up) and was going to start CPR.  It was at that point, I suppose, that I awoke and confusedly asked them what was going on.  They got me a sprite and we went along our merry way!  After that, it was just a lot of rest and then I gradually got back in to working and living life again normally.

Pretty good day

Today was a good day.  It started with a chocolate whey protein drink (made with regular milk this time) for me and some waffles for the two small children in my household.  Then I got to prepare my wonderful daily mouth rinse solution consisting of water, baking soda and salt.  It is super yummy and I absolutely LOVE using it 4 to 6 times a day (that is sarcasm for those that don't know me).  With that and my trusty $1,500 water cup, I was off to radiation for the day.
Nothing of note to report on the radiation front, other than they are finally getting it all down with me and things are moving along much more smoothly now.  I did talk again with a guy that I see there every morning more about his treatment and I will just say that I am glad right now that I do not have prostate cancer.  After radiation, it was off to work!  I spent the rest of the day at work and headed home after that.  I will say that today I feel pretty much normal again.  I am starting to have difficulties with the process of eating, but my appetite today was great.  My jaw and muscles on the left side of my face start hurting fairly badly as I chew and the left side of my throat is starting to feel somewhat sore.  Other than that I had a very nice Monday, all things considered.  I am learning quickly why they tell you to stick with soft foods during this treatment and I imagine soft, easily chewed foods will become my main source of nutrition.
The only other thing that I need to document now is the puzzle that I have been working on for about 3 weeks.  I would say it took me about 2 days to complete half of it and Sunday night we finished it, finally!  It was the most difficult puzzle that I have ever done.  It was called The Apple Orchard and it featured a large apple tree as the main feature.  All puzzle pieces were roughly the same shape and the whole tree section looked the same.  I would sit for hours staring at it and only get a couple pieces placed correctly.  On Sunday, I finally told the boys that I would finish it that day or throw it away.  At about 11:15 pm, Sunday night, we placed the last piece and rejoiced, all the while planning to immediately get rid of it so we don't have to look at it again.  Let me know if you are interested in owning this piece of Stobb history, as it needs to get out of my house immediately.
Time to shut it down for the night, I have written my entry and supplied Robby with 150 MBs of zipped Cayman Island pictures, so I feel the time is right to get some rest.  Big day tomorrow, chemo session #2 will be completed and then I will have something to compare with how I felt last week.

14-15%

As of today, I am about 14% complete with chemo and 15% complete with radiation.  As with this entire ordeal, this last week has been filled with ups and downs.  I am now finished with an entire week of treatments and so I somewhat know what my schedule will look like for the next 40 days or so.  I am going to add a countdown to the blog that will count the seconds until that glorious day in late August when I will be finished with my scheduled treatment.
Radiation this morning went very smoothly.  In and out in about 20 minutes.  There is one fun thing that I don't believe that I have mentioned yet, and it has to do with the last dose of radiation that I receive before I am allowed off the table.  After the majority of radiation has been applied to me from various angles, the head of the machine rotates from behind me and stops directly over my head.  The operators come back in the room with me and attach some additional apparatus to the head of the machine and insert some lead "blocking" to only allow the radiation to hit me in a certain area.  As part of this, they run me up on the table vertically until my chin is pressed against the machine and then manually rotate the machine until they get it and me in the correct position.  Every day this week during this step, they have managed to get a significant portion of my beard caught in some part of the machine so that as they are positioning me, my beard is being pulled in all kinds of different directions.  And the coolest thing is that I can't even say anything about it to them as my mouthpiece prevents any communication other than a meager grunt.  
Couldn't make myself drink my whey protein and almond milk this morning.  I will have to get better about that and maybe switch it up so I am not drinking the same stuff all the time and hopefully that will give me a better chance of keeping up with my nutrition.  Just looking at the tub of whey protein made me queasy, and smelling it probably would have put me over the edge.  I have decided that the act of eating makes me feel ok, but the thought and smell of food makes me somewhat sick.  I am still eating fine and my jaw is even loosening up some more (post surgery) and making the process go a little smoother.  The other discovery of the day is that when I have to talk for extended periods of time, my mouth gets very dry.  It's a good thing I am drinking over a gallon of water a day to help with that, I suppose.  It is probably also a good thing that I don't like talking as well.  I physical side not also, is that I am starting to feel some soreness in the left side of my throat when I swallow.  It is not all that painful and nothing that I will be concerned about right now.  I have yet to master the fluoride trays, but the last 2 nights I have made considerable progress toward making the process bearable.  I am currently down to only wildly gagging a couple of times when I first put them in, versus the 10 minutes of continuous gagging from earlier in the week.
I close with a picture from May of this year (a time between surgery 1 and 2).  This was taken at The Reef Resort in Grand Cayman while we were down there for Robby's wedding.  It was actually right after we got back from this trip that I went in to see the doctor about what I thought was a growing lump in my neck.  Only 6 more chemo sessions and 28 radiation treatments to go...

Chromebook saves the day!

My post yesterday was the inaugural from my new Chromebook that I ordered earlier in the week.  I have wanted to try one out for awhile, and now looked like a good time to try one out.  It will take a little getting used to, but I am liking the concept as of right now.

This is what I see above me when lying on my back.

Radiation was running right on time today, I was in the room a little after 8:30.  I still need to get a picture of the mask, but I keep forgetting when I am in there.  Anyway, usual routine...take my shirt off, pose for the ladies, lay down on the table, put my mouthpiece in, watch them place the mask over my head and chest, wiggle around a little until it slides down over me and then listen to the harsh clamping sounds as they lock me into immobilization.  After that, I lift my arms up and the straps are placed around my wrists and I can then straighten my legs to pull my shoulders down.  A few minor body movements later and they left the room to start the process.  I was a little more anxious today during the radiation due to the mask pressing rather uncomfortably on my right eye, but I was back in my truck by 9 am.  The radiation machine is a pretty amazing piece of equipment.  I can see certain things happening as I am laying there immobilized and the radiation is active, and what I can see moving are small individually motorized "shields" moving around to shape the radiation field as it is applied to my body.  

After radiation treatment, I went in to work for a little while to get a few things accomplished there.  During this time, I had my first moderate case of nausea that was bad enough to make me reach for my medicine I carry with me to deal with that.  It seemed to get rid of a good bit of the nausea, but I definitely did not feel all that normal.  I was able to power down some food at lunch and then I had to head off to meet with my ENT surgeon for a follow up.

Dr. Manish Wani is the surgeon who has operated on my neck twice now and with whom I have met with almost every month since December 2011.  I like him immensely and I also feel that I could not have had a better surgeon to perform the two procedures that I have had.  The one question that I wanted to ask him was whether or not he felt that he removed all of the cancer that was present during surgery, or if he thought there was some still there that he could not surgically remove.  Indeed the latter was the case.  He does not think that he was able to remove the entire tumor as it had invaded quite a large and delicate area.  This is where the Chromebook saved the day.  I was able to pull up reports written by M.D. Anderson doctors regarding my most recent post-operative CT scan and also the PET scan and let Dr. Wani read them while we were sitting in there with him.  He said basically that the reports from the scans indicate as good of news as you could hope for in a situation like this.  My take from this is that the scans show activity in the area, but it can not be distinguished as cancer versus recovery post surgery.  I filled out some forms so that he could get a copy of the actual images from those M.D.A. scans and he could look at them.  

While I was having all of this fun, my dear mother and sister were dealing with the brood of 5 cousins that are all in town enjoying each others company.  The picture at left shows them as they all embark on a long and perilous journey into the heart of Houston to go the the zoo.  I think it is only supposed to be 99 degrees today, so it is a perfect day for it.  Now we are just all chillin' at Hotel Stobb waiting for David to show up and make dinner.  Hurry up, brother!

Just another day

I imagine that today will be my new normal for the foreseeable future.  Checked in for radiation early (a wonderful trait that I inherited from my father) and had the pleasure of sitting in the waiting area and watching everybody else around me get called in, receive treatment and then leave.  About 15 minutes after my appointment time, they came out to tell me that they were having communication difficulties with the machine and that they would be running a little late.  I told them that I would be fine and that I would rather they take their time and fix the machine so that it doesn't cook my brainstem.  After a while, they finally came and got me and I again assumed my usual position and we got started.  Once I was positioned, everything went well and I was definitely done quicker than the previous two days.  I am still having sensations when the radiation is applied to certain areas and now I swear that I can smell something.  All in all, pretty uneventful and I think that I can handle it as such.  I think smells are starting to bother me and make me nauseous, so that will be an interesting development that I shall be keeping track of.

The colored areas are where I receive radiation

Today was also my weekly visit with my radiation oncologist and it was good to talk to him now that I have started treatment.  He seems very optimistic that I should be spared from some of the really nasty side effects of all this treatment, so that is a good positive for the day.  I also met with the dietitian and she went over what I need to be doing nutritionally over the next couple of months.  I will say that I am already not all that interested in food right now after only 3 days, which is, for me, somewhat surprising.  I did have an awesome dinner tonight, though (thank you Jessica).  Cheese tortellini with alfredo sauce and some meatballs.   That was some good eating and super easy on my still recovering from surgery jaw issues.
Last thought of the day is about my fluoride carriers that I have to use every day for the rest of my life.  I hate them.  I hate looking at them, touching them, and most of all I hate gagging for 10 minutes because of them.  But I will continue to use them in hopes that I will be better off for it.

Down with the sickness

So radiation day 2 went WAY better than day 1, as they had predicted.  They said it should go a little quicker in the next few days and then it will just become routine.  One pleasant silver lining in all of this is that (thus far) all of the people that I am dealing with in all of my treatments and appointments are ridiculously nice and try to make everything going on as comfortable as they can.  The machine took a little different pass today as it applied the radiation, so I am interested to see if that changes every day or if this will be the new normal. I could again feel sensations when the radiation was active, but the whole experience was much less unpleasant.

When I came back out into the radiation waiting area, Jessica was talking to a couple that was sitting there.  I got a glimpse into what these treatments can do to me, and it was not pretty.  He had cancer on his tongue and was currently going through the same neck radiation and chemo that I am scheduled to have.  He was much further along in treatment and the side effects were really starting to adversely affect him.  It was good to see in a sense to see what the future could look like, but also to try everything in my power to do all I can to try and manage the overall effects.  I have to be diligent in caring for my mouth, that much they have hammered on me and I have now seen the effects that lapses can produce.

As I type this, I am undergoing my first actual chemotherapy treatment.  I am receiving a single drug called Cisplatin.  From what I have read about it, it is one of the first chemo drugs to be approved by the FDA for cancer treatment and it is one of the most severe in terms of causing nausea.  The treatment is about 3 hours total.  They start me with a cocktail of a steroid (that supposedly helps with nausea in the days that follow) and a more immediate acting anti-nausea medication.  That takes about 30 minutes and then they do a little flush and hook up the big boy.  The cisplatin will be administered over the course of a two hour period.  I have a nice little room that I am sitting in for this part of treatment with my own TV and recliner.  Nothing to report on the first chemo session other than it was much better than the first radiation treatment.  The IV stick was a little painful and the nurse was a talker, but both of those things are manageable.  
We were faced with some harsh realities today in regards to what all of this treatment can possibly do to me, but the hope is that I can stay on top of everything and that my body responds well.  Checking out for now, but I will post if anything interesting happens before tomorrow.

It has begun.

This blog may not turn out to be 100% chronologically accurate, as I must now break from the historical accounts that got me to where I am today and simply write about today.  This is Monday, July 8th, 2013 and I had the awesomely unpleasant experience that is my first head/neck radiation treatment.  I had undergone a "simulation" where I received alignment marks on my body and they made me an awesome perforated plastic "mask" that clamps me to the table so I don't move.  That simulation was somewhat unpleasant.  Today was much more so.  The mask fits relatively tightly around my head and chest and comes with an amazingly uncomfortable mouth piece that I get to bite down on.  There is a strap around each of my wrists that connects to a straight board at my feet.  When I straighten my legs and lie down on the table, the straps pull my arms and shoulders down and this is the position I am in when subjected to the radiation.  The fun part of today was the the 10-15 minute treatment lasted for right at one hour.  There was additional setup that had to be completed, then they would run a simulation without the radiation, then someone would come to verify that everything looked good and we were ready to go.  At some point my radiation oncologist showed up and didn't like something, so they had to remove the mask and alter something and then strap me back down and continue.  All the while they were very adamant that I not move at all, to which I could only grunt back at them in disgust.  About an hour after they began, I was allowed to get off the table and continue about my day, all the while wonder what they had just done to me.

The radiation itself did not hurt, but I could definitely tell something was happening when it was actively being applied.  I could feel something not on the surface of my neck, as I have not had any feeling in my neck since the first surgery, but further underneath the skin.  It was a very strange feeling, but not really unpleasant.  It also seemed that I could taste something, nothing in particular, but just the sensation of tasting something (if that makes any sense).  I would estimate that of the hour I spent on that table, the radiation was being applied for roughly 2 minutes.  I was told that what happened today was an extreme case, and that tomorrow will be better and each day after that even more so.  I am not sure how long the side effect will take to get very unpleasant but I am pretty sure I can start to feel different things happening.  This could be all in my mind, but at lunch today I really thought that something tasted off in the food I was eating.  I didn't notice anything odd tasting in a wonderful dinner that I had at my parents house, but I am interested to see how far that taste issues go.  Also, I feel like my mouth has already begun to dry out, but I am doing my best to drink ridiculous amounts of water and do all my new mouth care operations that I have been instructed to do daily.  Other than those two things everything feels pretty normal on day 1.
Speaking of the aforementioned dinner at my parents house, it was a lovely evening spent with my parents, my two siblings, my wife and the entire menagerie of kids.  My brother, David, flew in from San Francisco with his daughter today and my sister, Kristina, drove in from Dripping Springs with her two daughters.  Add in a healthy mix of raw little boy energy in Bowen and A.J. and you have yourself one heck of a good evening.  It means a lot to me that they both came in town as I begin this treatment and I will not be able to thank them enough for it.  As usual, mom came through with a delicious meal and it was even good enough for most of the kids.
Tomorrow will be another day and I definitely have some apprehension about starting chemo and what that will do to my body.  Time will tell but right now I can just hope for the best.

In the beginning...

...there was a cluster of what I thought to be very painful fever blisters on the side of my tongue, way in the back on my left hand side along with a nice case of strep throat.  That was July-August of 2011.  Medicine was administered and the strep infection was vanquished!  That was that.  Fast forward to November of that same year when I began to feel like I always had food or something stuck in my mouth at the base of my tongue on the left hand side.  At first inspection, it appeared to merely be a raised, whitish patch on my tongue roughly in the same location as the cluster of fever blisters that I had a few months ago.  It did not concern me that much at the time.  I held out until around Christmas of 2011, at which point I decided that it had indeed gotten bigger and I made an appointment to go see my primary care doctor about it.
I can remember this visit to the doctor very well to this day.  He took one look at the lesion on my tongue and told me I needed to make an appointment with an ENT specialist immediately and he gave me a referral.  At that point I began to be a little more concerned about what this was on the base of my tongue.  The ENT visit was super-exciting as they took a couple of core samples from the part of my tongue in question.  That was not enjoyable, and lucky for little Bowen and A.J., they got to sit there and watch the whole thing go down.  It took a few days for the biopsy to come back, but when it did, it confirmed that the growth on my tongue was classified as a squamous cell carcinoma.  Thus began the roller coaster that we have been riding since that initial diagnosis that seems so long ago.

Method to the madness

Today is the last day of work for me prior to beginning my treatment schedule on Monday, July 8th, 2013.  I am finding it hard to focus on anything right now other than what I am about to subject myself to in the coming months.  Questions abound, but no definitive answers exist.  Many people have been quick to tell me what COULD happen, but as of today, I have yet to find someone who can tell me what WILL happen.  Ultimately, I have to go through with this course of action that will hopefully rid me of the cancer that has been active in my body for a couple years now, but my mind is uneasy with the uncertainty of what the effects of this treatment will mean for me as I live from this day forward.

My intent with this blog is twofold; the first intent is to use this as a means to keep a daily journal to keep track of my current state and track my status as I go through this treatment course, and the second is to keep people abreast of what's going on with my treatment and my daily life (if anyone cares).  I currently do not plan on publishing this blog for all to see, but I will start with a select group of invitees and branch out if and when I see the need.

I am going to start with some history and how we got to this point in the next few posts, but then I will end up with a daily entry (hopefully) with the happenings of the day.