Phase 1 is complete

Today's Chemo Cocktail

Just a quick note this evening to share the fact that I made it through today with little issue to report.  The double chemo cocktail has been administered so Phase 1 is now complete.  Did not take near as long as I was led to believe going in to it, so that was a pleasant surprise.  Jessica was there through the whole thing, in her usual spot at my side.  I also had other visitors stop in while I was there, which tends to make the time a bit more enjoyable.  My parents stopped in early on their way to San Francisco, so I got to visit with them for a little while.  Robby also came by and sat with me for the majority of the time that the drugs were being administered and it was good to have him there.
Step one is to insert the IV into a vein in my right hand and secure it with as much adhesive tape as is physically possible.  I first get 30 minutes of anti-nausea medicine with a 30 minute wait period after.  Then it was 60 minutes of the Docetaxel, followed by 30 minutes of Carboplatin.  After that, about a 5 minute flush with saline and out the door I went.  I think we were out of there about noon, and we were glad to be finished.  Today's combination of drugs made my arm sore for awhile, but that was the extent of the main reaction.  I felt extremely tired all day, partly probably due to me waking up with some pretty intense pain at 4 am and not being able to get back to sleep.  That and being very apprehensive about the coming treatment.  Currently I have some mild nausea and some pain, but nothing that is overly troublesome and I am hopeful that I get some good rest.
Other than the treatment, it was a somewhat uneventful day.  I did make it by the farmers market on Airline in Houston and picked up supplies for next weeks juice fest with my sister and her family.  I am going to be staying with my sister the next couple of weeks while I work just so I am not living by myself up there after having chemo this week and the uncontrollable growing mass of malice still showing no signs of slowing down.  I am worried that it will start to impair my ability to breath and figured that it might be good to stay somewhere that others can help keep an eye on me.  I will be taking my juicer and we will be treated to wonderful, nutritious vegetable concoctions comprised of kale, spinach, beets, celery, carrots, squash, cucumbers and whatever else we decide to throw in there.  The Vannoys are in for quite a treat in the coming weeks and will likely rejoice the day I leave when they can resume their normal life.  Must sleep now and get ready for A.J. soccer game in the morning.
Jessica also did correct me about something I said in the post yesterday.  The shot I am getting at MD Anderson tomorrow is to boost my white blood cell count, not for nausea.  It is given in hopes that my blood cell counts rebound after they hit their low point after this chemo and I am ready to go for surgery on the 13th.  Good night.

...and so it begins again...

Unfortunately, the time has come again that I will be utilizing the blog post to attempt to keep my sanity about everything and try to keep everyone who has any interest up to date as to what is going on and how everything is going.  I definitely found this to be rather therapeutic during chemo and radiation the last time, and so as I launch into the next round of resections and recoveries and controlled poisonings and Chernobylesque levels of radiation exposure, I hope to continue this as a means of release and a source of information.
Slightly over 2 months ago, I had a CT scan of the head and neck as a normal follow up procedure and, at that point in time, my images were unremarkable and all seemed right with me and the world.  Fast forward to last Monday, April 14th when I was at my ENT surgeons office complaining of a lump at the base of my neck that was starting to concern me.  Maybe it was there in some form or fashion for a month, but I can't be sure of the date that I first noticed it.  He was rather concerned and did his obligatory through the nose throat scoping but then also performed an ultrasound guided needle biopsy (sounds way more glamorous than it actually is) to assess the cells that made up the mass.  For anyone unfamiliar with this procedure, imagine taking a needle and inserting it slowly into some part of the body, say the front of the neck, then wildly jamming it in and out and back and forth for 15 seconds before removing said needle and repeating a couple more times for good measure.  Put lightly, it is not my favorite diagnostic procedure.  I leave his office and find out later that he is concerned enough that he called my doctor at MD Anderson and recommended I have yet another surgery pronto even before any results came back.  Thus began the current iteration, the outcome of which is very indeterminate and the road ahead is filled with great uncertainty.  Everything this round will be done through MD Anderson.

Needle biopsy supplies

Now for some details on the current plan to go about treating it this time.  The first step happens this morning and is a two drug chemotherapy concoction that I will be getting in hopes that the tumor responds by slowing its rapid growth or hopefully shrinking some prior to surgery.  The two chemo agents are CARBOPLATIN and DOCETAXEL.  This will be followed by a shot at least 24 hours later that I believe is for nausea, but I must say I don't quite remember.  I will have yet another surgery on May 13th.  I have two tumors at the base of my neck, one growing around the thyroid and pressing against my trachea and the other is just behind my right collar bone.  The surgery will remove my thyroid, the tumors and anything else they determine needs to come out.  They will also be taking a "palm-sized' portion of my skin in the affected area and a plastic surgeon will be part of the surgical team to reconstruct anything in my neck that will need it and to graft skin from another part of my body to my neck.  Once surgery is complete I will be allowed to recover for a bit and then they will again administer daily radiation to my neck in combination with chemotherapy.  For the type of cancer I have, the radiation is the primary treatment and the chemo is systematic and more a secondary treatment to work with the radiation.  This cancer does not respond very well to chemo alone so the radiation is the best treatment for what I have.  It is a very risky proposition from what I understand re-radiating an already radiated part of the body and the risks are great for very debilitating and permanent damage to all of the soft tissues involved.  To that end, I am pretty sure that MD Anderson is one of the few places around that would even attempt to do what they are about to, so I am at least fortune in that regard.  They are still treating this a localized recurrence since it is still contained in my head and neck region and as such they feel they have some chance to actually get it this time.  Chances are very high, however, that this will return and the fear would be it showing up somewhere else in my body (lungs are the ultimate destination for this type of cancer).  If it progresses to that point, there is very little that even they can do or attempt to do for me.  I can only hope that the third time is the charm and that we can miraculously get this out of my body once and for all and that my overall quality of life after this round of treatments is not so impacted that things become tremendously difficult.
In the coming days I will try to update as to all the life changes that have occurred since my last round of posting as much good had been happening prior to this most recent diagnosis.  I got a new (awesome) job that I am enjoying immensely, we spent Christmas in San Francisco, we were about to sell our house in Katy and buy one on the shores of Lake Travis northwest of Austin...much was happening but now we revert to a holding pattern until I can get this health business under control.

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.