Results are in...

My first post-treatment CT scan was performed last Thursday, October 10th.  I have been developing a mild allergic reaction to the iodine-based IV contrast that they administer during the CT scan, so I have to take a Prednisone regimen starting 12 hours before.  That seems to halt the allergic reaction that I have been experiencing when I get a CT scan.  It's hard for me to hold my head still when I get the overwhelming urge to unleash one hell of a violent sneeze when they run the contrast through my body.  Anyway, the scan itself went off without a hitch, just had to drive in to Houston to get it done.

Still no real beard re-growth to speak of, so all I have to do with myself these days is mess around with this ridiculous mustache.  I only say ridiculous because I absolutely HATE being unable to grow any hair on my chin and left side of my face.  It sucks.  I can, at least, style my mustache with official mustache wax (thanks Jessica)!  Bowen and A.J. seem to get a pretty big kick out of it, so at least there is some entertainment value associated with it.
Physically everything seems to be getting better or has already fully recovered.  I seem to be tired all the time, but that is probably just a result of doing nothing for month at a time so I will have to work on elevating my energy levels.  I think my taste is getting better, but there still are things that don't taste right or just don't taste at all.  Sweet, carbonated beverages are a no-go, but I don't really need those anyway.  I find it interesting the way my mouth reacts to different foods.  Sweet things, in general, leave a nasty taste and funky feeling inside my mouth.  I believe that I am starting to taste salty foods a little more, but I think it has to be VERY salty for me to pick out that taste.  Everything tends to taste sweet to me, so there are still some improvements that can be made with my taste sensation.  Eating is still a bit more of a challenge than it used to be and I find that I have to brush and floss after eating anything or my mouth gets all funky.  I guess this whole ordeal has at least improved my overall habits dealing with oral hygiene.  That is a plus.
I had a follow up with my ENT surgeon last Friday for my monthly scoping!  That is always a pleasant experience.  3 second shots of a lidocaine mist in each nostril followed by a camera going in the left nostril until it reaches the magic spot whereby it produces an uncontrollable gag reflex.  Then a bunch of pictures are taken of various things while I am told to make various 'aaaaaaahs' and 'oooooooooos' in between my guttural gagging noises.  Nothing to it!  That is all followed with the standard, "everything looks good and I will see you in a month!" and then out the door I go.  In addition to this appointment, I also had appointments this week with my radiation oncologist and my medical oncologist.  I think the appointment with my medical oncologist was my favorite, as he was the only one to NOT stick a camera up my nose and down into my throat.  I was not expecting much of anything as far as major news goes and I would say that it lived up to what I was expecting.  What I want them to say is that it is gone and I can go about my business as usual and just focus on getting better.  I did receive some bad news in the mix in that my radiation oncologist does not think my beard will ever come back.  I hope that I can prove him wrong.  The results of the scan indicate something abnormal on the left hand side in my neck, but it is unknown as of this point in time.  Their recommended action is to let things continue healing and have another scan in 3 months to see what it looks like then.  It could be a treated lymph node, scar tissue, residual disease, etc...  Basically it could be anything, good or bad.  They are not overly concerned with it as it did not change in size in the scan from before treatment to the ones after treatment.  I would imagine this is what I will be hearing for a while now until something changes for better or for worse.  I hope that it is for the better.
On the brighter side, I am going to try making authentic Bavarian Pretzels this coming weekend.  Also going to make about 20 lbs of Bratwurst and grinding meat and making sausage always makes me feel better.  

a month worth of "normal"

It has been a while now since I have updated interested parties on my condition.  At the time of my last post, I was "peaking" at my low point.  I didn't know it at the time, but at that point the worst was pretty much behind me.  Now, here it is exactly 4 weeks after I finished my treatments and things have seemingly calmed down.  I now have about a month off from any and all visits to the doctor and that is a nice feeling right now.  October 10th I will go back for my first CT scan post-treatment which will serve as a baseline for all further CT scans.  I don't anticipate much coming from this first CT scan unless something dramatic shows up.  After the 10th, I will go see both the medical oncologist and the radiation oncologist the following week.  
I went last week and had blood work done and saw the medical oncologist to go over what those results were.  As of last week all my blood cell counts were back to normal and he told me that everything was looking good in my recovery.  I have also begun to feel much, much better on a daily basis.  The only real problem I am dealing with these days is pain in my jaw and left side of my face when I eat solid food.  The pain is actually quite intense, so I am still somewhat limited in what I can eat.  My surgeon put me on some anti-inflammatory medicine and a muscle relaxer as well to see if that helps.  Thus far, it has been doing a good job of lessening the severity of the pain when I eat, so I am optimistic that when I am off the medicine the pain should be more manageable.  I still don't have much taste when it comes to food, but I am feeling that in the last couple of days more and more flavors are recognizable and I hope that is a sign that my taste is coming back.  Other than the eating pain and some lingering fatigue all seems to be headed in the right direction.  I am still incapable of going with a full beard as the hair has not started coming back at all for most of my face, but I am hopeful that it returns someday.  Now, I can simply concentrate on growing the best mustache I can and getting some beard balm so that I can style it like a professional.
To sum it all up, I am still alive and very happy to be so.  Hopefully I have many more years to look forward to, regardless of the condition of my facial hair.  As the days since finishing treatment continue to grow, I am filled with more and more hope that I can put this all behind me and focus on what is ahead.  Goodnight for now, more to come...

Hump day

It has now been one week since I finished up and what a week it was.  Now that I am actually taking my pain pills, I can deal with the pain levels but I don't function that well when taking hydrocodone every 4 hours.  Lots of sleeping in my future as long as this course holds true.  I will take sleeping all day versus the pain I was in over the last weekend, however, so I guess I will just have to make due.
My neck seems to be healing up quite nicely.  I am down to only applying aquaphor to my actual scar line and I am hoping in a couple of days I won't even need it there.  The skin that has been exposed to radiation is always going to be funky, though.  I think it will look like a healed burned area, but time will tell.  While the neck continues to get better, the inside of my mouth continues to get worse.  Maybe it is due to swelling tissue and more sores, but I continue to struggle to eat and drink normally.  If I can keep the food on the right side of my mouth throughout the whole process, I can usually get some solid food into my body.  It is definitely a slow process, however, but one of vital importance to me if I want continue healing quickly.  I partook of three actual meals today for the first time in a week, so I am encouraged that I will be able to eat more in the coming days.  It is an interesting struggle, to know that I have to eat to get better but the act of eating is so painful and discouraging that it is hard to build up the strength to even try.  I am encouraged after today and that will help as I move forward.  I think it has been a while since I mentioned how much I hate the daily fluoride treatments that I have to do at night before I go to bed.  I hate them very much.  That is all I have to say about that.
One bright spot in my day is that I get to go with Bowen and A.J. to school and I am there to get them in the afternoon when they get out of school.  Today we rode bikes to school and that is the plan for tomorrow.  My doctor did tell me that a little bit of exercise is good for my recovery and it is about all I can do to make it to and from the school on my bike and then I am knocked out for a while, but in the end I think it is good for me.  Regardless, I count myself lucky that I get some extra time and activities with my sons that I normally would not get had I simply been at work all day.
I think that is about it and I just got extremely dizzy and lightheaded so I think that means I should go to sleep.  One day closer to feeling better.

Ouch!

Wow.
Very soon after the euphoria of finally finishing treatment subsided, the seriousness of my situation was very quick to return.  It was such a great feeling to finally be finished with the everyday treatments and I really had not experienced all that much in the way of severe side effects so I imagine that I let my guard down a little and thought I might squeak by and return to normal life relatively quickly.  I believe the celebration a bit premature and I am once again humbled by the severity of what my body has been subjected to.  I am also extremely grateful that I only received the considerable dosage of radiation to only the left side of my head and neck.  I cringe in horror to think that the pain that I feel now would be doubled and on both sides of my throat, mouth and neck.  I can, without a doubt, say that last weekend was the most miserable 2-3 day stretch of my entire life and I don't feel like it is getting better as of yet.  Everything I read warned me to be ready for a couple weeks of hell after finishing treatment and prior to any significant recovery, and that has definitely been the case thus far.  Maybe my body has been able to fight off the effects that normally start plaguing people 3 weeks into treatment and delayed the onset until after I finished, or the cumulative effects have just built up to the point now where I am unable to cope as I could just a week ago.
Overall, there is much more pain now and it has increased substantially over the past week and is very much affecting normal day-to-day activities.  Every swallow sends tendrils of intense pain through the left half of my throat and just talking has become something of a struggle.  In addition to the throat pain, the existing sores in my mouth have become more painful and have been joined by an ever increasing number of friends that make my days oh-so miserable.  Keeping up with my mouth care and water intake and food intake has become a struggle that I am fighting a losing battle with each day.  It seems like such an easy thing, to drink water or to rinse my mouth out or to even eat some cantaloupe.  I agree that these things SEEM like easy activities, but the fire in my mouth and throat have different ideas about what is easy and what is extremely difficult.  I spent most of the weekend not taking my pain pills as I was also dealing with nasty side effects from those pills and I needed some time to work things out.  In hindsight, that was probably a bad idea, but I felt it needed to be done.  Solid food is becoming more difficult to eat, to the point that Jessica picked me up a whole lot of Ensure at the store today (thank you!).  I believe that I will be taking in the majority of my calories in the foreseeable future in liquid form.
Anyway, I think that is about it for right now.  I will try to write more in the coming days, and I am super pumped for one thing today and that is the arrival of my newest shirt.  It looks like this:

  

Finished (a quickie)

A quick note this afternoon to commemorate the fact that my treatment is DONE!  Eight weeks from now, I will have another high contrast head/neck CT scan that will serve as my baseline from here on out.  I wanted to put a bunch of pictures here of the wonderful people at the MD Anderson Regional Care Facility in Katy, the ones that have put up with me for the past 7 weeks plus.  THANK YOU SO MUCH!

Veronica-fresh off some vacation!

Mary-doing what she does best!

Sheryl-multitasking at its finest!

I thought also I would share something my mother sent me this morning that really connected with me on this wonderful day...
My health has been tested:
I am in a limbo of not knowing.
Let me not hasten to conclusions:
the condition of my body
is beyond my understanding.
My life is not suspended:
it continues as before.
The spirit is undimmed.

We cannot expect perfection.
We can only hope to continue.

The spirit leases a beautiful house
in the earthquake zone.

Thanks to the Divine for the strength
to be patient.

Dr. Chronowski and Nurse Kim

Linda-radiation treatment guru.

Platelets rising

And after a week off from chemo, the verdict is in!  Platelets rebounded from 74,000 last week to around 165,000 this morning.  Now their big concern is my white blood cell count, which will leave me more susceptible to infection and sickness but they went ahead and gave me the final chemo this morning.  I am very relieved to have this final dose administered and also very happy that my chemo treatment is now finished.  It should be an interesting couple of weeks now that I have had my final chemo and am about to finish up radiation.  I am now taking my pain pill every 4 hours or so and then my nausea medicine will be every 8 hours.  The silver lining with some of this pain business is that I can't feel my neck since the first surgery and I think that if I did have feeling this pain would be exponentially worse.  Gnarly neck seems to be getting worse and the pain in my mouth is also increasing in magnitude.  The mouth issues are making it increasingly difficult to eat and it even affects my ability to intake liquids.  Liquids irritate the sores that are currently in my mouth, mostly on the left side of my tongue.  Talking also irritates it, so I have to keep that to a minimum (which totally goes against all the fibers of my being).  I spend the majority of my days laying in my bed and dozing in and out of consciousness.  Fatigue is a constant these days and it is a difficult side effect to ignore.
I got to ring the chemo bell today surrounded by the nurses that were there when I finished up.  It is was a great feeling to know that I will not have to go back there (not for now, at least) and my treatment is complete.  They make a big deal out of finishing and it helps makes the end of the process special.  If it wasn't for that ridiculous mustache and mangled neck and shoulder area, I would probably feel really good about the whole deal.  After chemo it was off to grab a bite to eat and I was able to power down quite a decent amount of food.  
The best part of the day came at about 7 pm, when UPS delivered my final day t-shirt.  I will be the first to report that it does not disappoint.  WOW.  I may be a little biased based on the simple fact that I picked it out, but I feel that I have really nailed it with this shirt.  It really ties the process together.  Not sure exactly yet on what bottoms I should pair with it, but regardless I think the shirt speaks for itself.  My plan is to take a sharpie and have all the people that have been involved with my treatment sign the shirt and really have something to commemorate the event.  Time to sign off for the day and try to get some rest, but I don't know how well I will sleep.  The steroid I get tends to keep me up the night of chemo and the pain doesn't let me sleep much anyway.  Good times are ahead.

The final countdown

We shall start off with the good that happened over this past weekend, that being Bowens first foray into an actual soccer tournament.  His team didn't win the whole thing, but he played amazingly  and was definitely one of the main reasons that they did as well as they did.  I am so very proud of him when he is out there giving it his all and I can't wait to see what sports he settles in on and the experiences that await him in all his pursuits.  He had two games Saturday and one on Sunday and while it was great to get out for a little while, it also served as a good reminder that I still have a long way to go before this while thing is finished.

Other than the tournament, the weekend was not all that great from my perspective.  I had to start taking pain pills, which I hate to do, but the pain level really started to ramp up on Friday and didn't really let up at all by Saturday.  It is mainly pain in the base of my neck and shoulder on the left hand side that get significant radiation and then my mouth is starting to bother me much more as well.  I will say that I am glad that I don't have feeling in the majority of my neck, because I imagine that the pain would be much worse if that were the case.  My neck has become very stiff and the mobility of my head is very much impacted.  When I don't have Aquaphor on my neck it feels like the skin is going to split in half when I turn my head.  The mouth issues are getting bad enough that it is very much impacting my eating, but we are working through what I can and can't eat on a daily basis.  I have found some vegetable dishes that I am a big fan of and the ageless classic of Campbells Chicken Noodle Soup is becoming a staple.  

Gnarly neck

Words can not begin to express the feelings that I am having now that I am only two days away from finishing.  When I started, it felt like this would never end and now that the end is here, I can't believe how quickly it went.  It is also weird to think about waking up Thursday and NOT having to go in for radiation.  I am now filled with these feelings of 'OK, now what??'.  It just feels like I am once again entering into the undefined realm of the unknown and I suppose the prospect of that is a bit scary for me again.  I want for this to be the end of it.  I want my beard back.  I want the pain to stop.  I want, I want, I want...  I sound a lot like A.J. right about now.

On to the big news of the day...I now have my shirt picked out that I am going to wear for my final day of radiation on Wednesday.  It is amazing and I think that everyone there is going to very much enjoy it.  Consider yourself lucky, dear blog reader, for you now get a sneak peak at what I have in store for them.  AND HOW!!!!