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!!!!

Blah!

We have officially less than one week until I am finished!  Only 4 more treatments and I can ring my bell and move on with my life.  I am really starting to drag these last few days and I can only imagine that it is going to get worse.  Complete lack of energy and where I do have feeling on my upper shoulder/neck/head area, the radiation is seriously burning my skin.  It also severely stiffens the muscles of my neck, so movement is a little more difficult and slow.  My radiation treatment shortened by about 5 minutes this morning when they cut out the final electron step.  I am also not sure if it is from the platelet loss or one of the many other aspects of my blood that are out of whack, but I am cold all the time.  It actually is kind of a useful trait to have here in Houston right now since we are approaching solar surface temperatures these days.
I am still finding it increasingly difficult to make myself eat.  Something about the mechanics of it are bothering me, but I can' exactly tell what it is.  Maybe it is because my tongue is swollen and hurts a bit when I have to use it to move food around to chew it.  Whatever it is, it is becoming more difficult.  I am still eating, though and hopefully things will start getting better in a couple of weeks.  Jessica is doing an awesome job of making things that are easy for me to eat and that don't have anything too offensive in it so I can keep getting something in me every night.  It also gets harder and harder every day to force down the water and I have started trying to add in some decaffeinated iced tea so that I have at least something else that I can drink.  Intensely sweet things now taste horrific to me.  I tried a sip of root beer the other day and it was disgusting.  That and cream cheese icing are the two things thus far that the taste has changed for the worse.  I can still power down a chocolate milk shake like a champ, so there is still hope.
My picture today is of a hairless bear and gives some insight in to how I feel out in the everyday world without my beard.  Just as bears should be covered with a magnificent coat of hair, so too should my face be covered with a spectacular display of hairy goodness.  Without it, we both look out of place, disturbing and completely unnatural.  

Only 5 more!

Such a glorious day today!  As of right now, I only have 5 more radiation treatments to undergo before my treatment is complete.  I can not express how much of a relief this simple fact is to me right now.  Showed up this morning for treatment and the two lovely ladies that work the front desk asked me if anyone had called me.  That is usually not a good sign, but I forged ahead as I don't want to tack on any more treatments because I miss some along the way.  Both machines were down this morning and the waiting room was overflowing with people waiting to receive their morning radiation burn.  Today is my day to meet with the doctor, so I went around the corner to initiate that process so that was at least out of the way and then I could just wait for radiation.  Before I see the radiation oncologist, I am subjected to an barrage of physical tests to assess my condition.  Weight (104 kg), body temperature, standing blood pressure and the final in the series, sitting blood pressure.  After successfully passing all those tests, it was off to see the doctor.  Nothing new came out of the doctor visit.  Just stay the course and it will get worse before it gets better.  When done with the doctor, it was back over to the radiation waiting area where they had at least gotten my normal machine up and working so they were slowly working their way through patients.  I finally was called back at about 10:30 am, a mere 2 hours after my scheduled 8:30 time-slot.  I was happy to wait, however, as I DO NOT want to extend my treatment past next Wednesday.  The treatment took a bit longer than normal as they worked around certain aspects of the machine that were still inoperable.  (It had nothing to do with the actual radiation, the biggest issue is they have a auxiliary x-ray head on the machine that they take the setup x-rays with for positioning and they could not use that, so they had to use the main machine head to do all the positioning and it takes longer that way)  Only thing of note today is that my skin is really showing the effects of the radiation burn, especially the scar line and the back of my shoulder is all torn up from it.

I had an awesome surprise waiting for me at work that I had no idea had been in the works for a while now.  A couple of my friends at work organized an awesome support rally for me that occurred yesterday, on a Tuesday when they knew I would be out for the day.  My sailing buddy brought in his boat and launched it in one of the ponds at work as a backdrop to their festivities and to show his sailing prowess, actually tacked a couple times across the very, very small pond.  The have also inspired the next brew, whenever I can actually do that again, Sailin' Stobb IPA will come to life and perhaps be a mainstay in the garage fridge as I move forward.  They got everybody to wear bald caps and large, fake beards and they drank (root)beer from an array of awesome steins.  Included was an awesome shirt for everybody that is depicted at right.  It was an awesome show of support from a group of people that mean a great deal to me, and I hope that I can express to them my utmost gratitude for what they have done.  It could not have come at a better time, as the days begin to wear on me hopefully this is the final push I need to make it through next week and beyond.  Thank you to everyone involved in this, and thank you to anyone who prayed for/with me and to all those who have kept me in their thoughts as I have continued through this journey.  I don't know that I will every be able to repay all the support that I have received, but I will start with this:  THANK YOU!

Platelets Down!

Whole lot of mixed feelings filled this 2nd to last Tuesday of my treatment cycle.  As is the routine every Tuesday, I went in first thing to the lab and had my blood drawn.  Then an uneventful round of radiation, although I did learn on fantastic fact.  Tomorrow is my last full version of radiation.  The machine hits me at 10 different positions with radiation, with the 10th and final requiring additional setup and it hits my old scar on the right side of my neck with electrons.  Tomorrow will be my last dose of that for the duration, so my treatment will actually be shorter come Thursday.  That was nice to hear and it is really starting to feel like I am about to finish this whole ordeal.  I also met with the medical oncologist and was informed that my platelets are too low and they would not be administering the Cisplatin for this week.  He also made it sound like I probably would not be getting it next week, but at this point I will come back in and get bloodwork done to see if I can have it next week.  That's where the mixed feelings come in.  I am feeling worse and worse and so not having the chemo this week is nice to let me hopefully recover some, but I also would rather have gone through the whole treatment schedule without missing any.  Nothing can be done now, so I will just hope that 5 chemo cycles will be sufficient, and the doctor seems to think that should be more than enough for me.
I have been very tired all the time this past week and my writing has suffered.  I have not felt like doing it and so I took a break.  I hope to be better about it in the next couple of weeks and so I am forcing myself to write this.  It is a crazy feeling for me to feel THIS tired all of the time.  Now along with the tired, I have a constant sick feeling in my stomach that is making it harder and harder to eat.  I still don't have very horrible mouth side effects, so I am optimistic for the rest of the time that I will still miss out on the intense sore throat and mouth sores.  Again, I feel very fortunate that I have been spared from some of the more severe side effects and to still be feeling so well this far into treatment.  My weight is still pretty good, it is dropping somewhat but nothing that concerns them enough to verbally reprimand me and tell me to eat more.  I am starting to have some shooting pains in the side of my face and my lower left jaw that are bothersome, but still manageable without taking anything too drastic.  
Since I shaved my beard off, I had been bothered every morning by an annoying tickle type of sensation on my chin during treatments when I am strapped down to the table with my mask on and my arms restrained.  That is somewhat troublesome when I am laying there unable to move or do anything about it.  I realized last Friday what it was when I looked at my mask after they took it off.  They have a series of taped areas all around the mask that show alignment marks and such, and stuck to much of this tape were many remnants of my once glorious beard.  Little hairs were sticking out everywhere from the mask and were the source of my ever-growing frustrations as I lay immobilized on the table.  On Monday morning before treatment, I grabbed my mask and began the process of removing the many hairs in question.  Talk about a difference!  I can now, once again, lay there and receive my radiation without thinking that I am about to lose it.
Quick note on the platelets...I believe that I mentioned previously that the normal count is 140-400 and lets ignore the units for this discussion.  2 weeks ago I was sitting pretty at 184, then in 1 weeks time that number was cut in half to 98.  My doctors cutoff to administer chemo is 100, but he went ahead and let me take my 5th cycle.  As of today, my platelets are at 74 and he thinks they will go lower so he didn't administer.  I am hoping they rebound in the next week and I can have the final dose next Tuesday.  It was pretty amazing to me that they nose dived all of a sudden and so quickly.  I guess that stuff really is doing something to my body that is not pleasant.  One week from tomorrow, it will all be over, regardless.  I can not wait for that day, as I am ready to be done with this and move on.

Thursday is back!

After a week of relatively good feelings and experiences, once again it is Thursday that comes along to knock me back a few steps.  Don't know exactly why sometimes I feel ok, and then other times I can feel like absolute crap.  Could be due to large doses of poison that my body gets subjected to 5 days a week, or maybe it is the weather.  I could tell this morning when I woke up that I wasn't going to have the best day today.  There is just a feeling that I have at times in my stomach that somewhat forewarns me that it's not going to be that great of a day.  So I had that going for me first thing this morning, but I tried to fight through it.  I ate breakfast and then headed off to my radiation appointment.  The good news is that there is only one more Thursday radiation appointment left!  Went to work after radiation and again forced down some food during lunch, but it was quite the losing battle today.  I got progressively tired throughout the day and ended up leaving work about an hour early and headed straight home and laid down in bed.  That was about 4.  I think I woke up around 8.  The constant nausea is hanging around again, but I am working through it.  I really wanted a bagel with cream cheese when I woke up, but had to settle for an english muffin thanks to the stupid local store that I went to.  I feel better now after eating a little something and now I just need to stay up until about 11:30 to take another Ativan, in hopes it helps with my symptoms tomorrow.
That's about all I got, other than to indulge my brother and post an image of his whimsical musings about who I look like with my various facial hair styles.  I feel like I have a better mustache, brother.

Happy wednesday

In exactly two weeks from today, I will be completely finished with this treatment path.  I found out today from my radiation oncologist that after I finish treatment, we will wait 8 weeks before I get my first scan to see how we did.  It will be a CT scan of my head and neck, and then after that scan I will have one once every 3 months for the foreseeable future.  This along with my monthly visits to my ENT surgeon for my nasal probing should keep me very familiar with my good doctor buddies.  I don't know if it is the optimism surging forth from the realization that I am so much closer to finishing, but I have felt very good all day long.  I still feel tired at times and I am currently and have been for some time already laid out in my bed, but my stomach has been feeling pretty good today.  Felt good enough that after work, I came home and worked on a broken sprinkler head.  I fixed the one that was broken and felt great about that, but then broke another one in a different part of the yard.  Now I get to dig that one up and hope I can replace it.  Good times.
I am feeling very fortunate these days that my symptoms are not worse and that I seem to be handling the whole treatment regime pretty well.  I think things could be much, much worse than what I am experiencing and for that I will be eternally grateful.  The inside of my mouth is showing signs of the radiation burn, but again, it is nothing that I can't deal with right now.  I look forward to what will be a glorious day in exactly two weeks from today.

In addition to being a kick ass day, I also debuted a kick ass mustache today.  Went ahead and trimmed off the chops and left the simple, yet beautiful stand alone 'stache.  Not sure how I am going to able to fight off the throngs of women throwing themselves at my feet, but I will try to manage.  This was done at Jessica's request, perhaps she didn't know exactly the kind of power that she was about to unleash.  Look out ladies...

Only two more tuesdays

Tuesdays are the long days of the week with radiation and chemo and a doctors visit to boot.  When I meet with the doctor, it tends to mess up my schedule and I don't get out of there until mid afternoon.  For some reason the medical oncologist always seems to take forever to see me.  He did mention something interesting as it pertains to my bloodwork this week.  He told me my platelets are getting low, and if it continues I might have to skip a chemo, but I am hopeful that they rebound this week so I can get in my final 2 chemos.  My first three weeks of chemo, my platelet count was in the mid 200 K/uL, then in week 4 it dropped to 187 K/uL and so today they must have dropped further.  For reference, a normal count is 140-400 K/uL.  Not sure if they will just skip a treatment or tack it on to the end, my general feeling is that they would just skip the chemo and let me finish out with the radiation.
I felt worse today during the actual chemo treatment for the first time in this process.  Just a general malaise that lasted the majority of the two hour Cisplatin infusion and I began feeling fairly nauseous right away.  As usual, Jessica came through again with some killer lunch that I got to enjoy while being infused with my weekly poison.  That helped me feel better, but did not totally alleviate all my problems.  I waited until about 7 before I finally did take an Ativan to hopefully help ease the nausea I am starting to feel this evening.
The picture at right was taken at Blue Hole which is outside of Wimberley while the boys were spending a couple of days with their cousins in Dripping Springs.  It looks like a pretty cool place that we will definitely have to visit again soon.  The boys made it back to us this evening and we are now currently engrossed in their new movie purchase, Underdog.  Would rather be doing nothing else, I have missed them.

 

Back to it

Another Monday down, only two more of these to endure.  It has been a while since I have posted, mostly due to my lack of an internet connection up at the lake.  The other factor was the fact that I have been exhausted.  Been doing quite a bit of sleeping and not much else.  I would say that I am surprised with just how tired that I feel  on a daily basis.  I start out in the morning usually feeling pretty good, but at some point in the morning I seem to hit a wall.  The weekend consisted of lots of napping.  
As far as how I am feeling, I am doing ok.  My throat continues to worsen on the left side.  The inside of my mouth is also feeling worse, not really specific sores or anything, just a general funky feeling.  It is also drying out more and more and I have a nasty taste that seems to linger in my mouth pretty much all the time.  Taste in general is gone, at least the normal tastes that I am used to.  Sweet foods are tasting strange and leave my mouth with an additional nasty feeling.  The skin on my neck that is subjected to the radiation is starting to show the burn from all of the exposure.  Also the back of my head that get the exit dose of radiation is losing hair.  That's not that big of a deal since I sport a bald head anyway, just thought it was worthy to note.  Today was the first Monday where I just didn't want to go to radiation.  I guess it is just wearing on me, but I am just over two weeks away from finishing the actual treatments.  Just a quick note today to update my status.  Tiredness has taken hold.