Back in Katy!!

I received a call on Sunday that the machine in Katy was still not fixed and so I had to get my treatment at the medical center again on Monday.  This time, the appointment was later in the morning, so I didn't have to get up and going crazy early.  I also loaded up the whole family for the trip so that I could utilize the HOV portions of the freeways that i would be travelling on.  I also decided to try out the free valet parking service offered to patients receiving radiation where you get to basically drop off your vehicle right by the door that you have to enter to go in to check in for radiation.  That worked out extremely well, I must say.  They got me in and out quickly and back on my way toward Katy with my mask and accessories in tow on the hope that Katy would get their machine fixed.

An image from before surgery showing the lump growing at the base of my neck

Later in the day on Monday, I received a call again with the delightful news that the machine in Katy was back up and functioning and my treatments on Tuesday would be in Katy.  That was welcome news.  This Tuesday was something special as well in that I was going to have a double dose of radiation.  So the schedule was labwork at 8 am, 8:30 radiation treatment #1 followed by a trip upstairs for my chemo administration, then back downstairs after that for radiation treatment #2.  I was there from about 8 am until 3 pm and they did all they could to me for one day.  The double treatment was to make up for one that I missed last wednesday when the machine first broke.  It's interesting the things that I find out when I talk to various people immersed in this world.  Everything is based on statistics.  Everything.  It was a long day at the facility and it feels very good to be propped up in my old-person adjustable bed typing this right now.  Also, I got good news today in that my treatment will actually end on the 25th of July, not the 31st as I was expecting.  Here's to you July 25!

As far as how I feel, everything seems to be going pretty well.  I was extremely tired last week, but have felt better the last couple of days.  Maybe it was the chemo and now I had recovered enough to feel a bit better just in time for them to kick my ass with it again, or maybe Jessica's dengue fever that she gave me last week just dragged me down more than normal.  Either way, I hope to be in better shape as I approach the end of this week.  I can feel changes happening with my skin similar to what I felt last year.  I have such little feeling in my neck in general after all the surgeries that it is hard for me to track the small little changes, but it is definitely starting to feel somewhat burned.  All seems well as we charge head on into what lies ahead.  The picture below is from last year and shows the radiation burns on my neck, but also of note is the hairline on my cheek...that is not shaved, it is the result of radiation.  Where there is hair-no radiation; where there is no hair-radiation.

Picture from last year, showing the radiation burns during treatment

Week #1, WHAT A MESS!!

After-mask effects

If week number 1 is any indication as to how things will go, I am in for quite a frustrating experience in the coming month.  Day 1 and 2 went by without a hitch, but we hit a brick wall come Wednesday.  I got a phone call early that morning that the machine was down and that I shouldn't come in for treatment until they call me later that day.  No such phone call came until late when they informed me that the machine was still down and likely wouldn't be up any time soon.  When that happened last year, I could be treated on the other machine (Katy has 2 radiation machines), but this year that is not an option.  The treatment plan calls for a specific type of machine to be used and I can only be treated on one of the machines in Katy.  So what option does that leave us, folks?  My only option is to receive treatments at the main MD Anderson location in the medical center in Houston.  I don't like that on many levels, but I don't really get a choice with this either.  They don't want me missing treatments and I have already missed one.  Everything is cumulative and the radiation interferes with the normal cell life cycle so timing of everything is critical.  I guess things could be worse, at least I have another option.  So Thursday's treatment was done at the medical center where I had to find everything.  Katy is so easy, one desk where they send me to a single waiting area with people that I am used to.  The main campus is a whole different animal.  They have a single reception desk but then they disperse you to a different waiting area, I think labeled Waiting Areas A through K.  That's a lot of waiting areas.  I had to stop by the Katy location to pick up my mask and other associated accessories that I need during treatment to take with me so I can use them at the other location.  I had an afternoon appointment and I made it down there with no issues other than the building is a maze and where I parked was at the absolute opposite end of the entire complex from where I needed to be.  They got me in and treated with little issue, so at least it all worked out.  This was Thursday and they told me to leave my mask because I would be coming back on Friday for treatment.  Sweet!  That is some more good news.  This was followed by even more good news, that being my appointment time: 7:20 am.  That makes for an early morning.  That at least means I get everything finished first thing and can get on with my day, other than the fact that I had to go back to Katy and meet with my radiation oncologist.  All in all, my first week of radiation was a mess.  Hopefully they can get it fixed so I can continue my normal schedule.

Outside of the scheduling mess, overall I don't feel all that well.  I don't remember it starting this badly so quickly but I am a year older and have gone through this before so maybe it is quicker to affect me negatively.  Who knows, but I am definitely more nauseous this go round that I remember ever being before.    It started about Wednesday and has been pretty steady since.  Only other real issue is the tiredness.  I am extremely tired.  Focus is also an issue, I have a hard time concentrating on anything for extended periods of time.  I do remember that, just didn't remember the onset being so early in the course of treatment.  Bonus pictures today are images of my radiation field from two different views.

Two rads and a chemo

Treatments for Monday and Tuesday are in the books!  Much of my concern about the radiation treatments has bee alleviated at this point and the hope is that I can handle it 31 more times.  There is much to be said for reserving judgement until after you experience something.  Now that I know how long the actual treatment lasts, I am somewhat more relaxed about the unwavering tightness of the mask.  Don't get me wrong, I still hate it immensely, but the machine they have be on and my treatment plan only has radiation going through me for less than 2 minutes.  I also learned some good information regarding the tightness of my mask for this go-round.  It started with me asking if we could perhaps just cut the eyes out of the mask, so I could at least blink and have an unobstructed view.  The simple answer to the question was no, but the reasoning behind it makes sense.  The mask does fit tighter than the one from last year and that is for one very important reason.  Because I have had prior radiation, the position of my body must be even more precise than it was last year, and therefore the tightness of the mask.  They also take even more time to precisely position me before starting the treatments and make numerous trips in and out of the room telling me to wiggle up, down, left, right and then verifying the position via x-ray.  The position that I ultimately lie in sucks due to the fact that I am flat on my back (for those who may not know, I don't lay flat anymore, ever, and have not since 2012) and the position of my head is some magical angle that makes it feel like I have a grape in my throat.  That doesn't help my anxiety over the thoughts of not being able to breathe, but thus far, it has not been too overwhelming.

In addition to starting radiation, I also have one fantastic dose of chemo under my belt.  The chemo session starts with some IV fluids with some nausea medicine and some steroid action as well.  After that, there is a 30 minute rest and then the good stuff.  I am pretty sure that they are actually infusing me with unicorn tears or something equally as magical, but they claim that it is actually a poison.  The Cisplatin is administered over the course of 2 hours and is followed by another quick fluid flush.  Overall, I think it takes between 3 and 4 hours for the whole process.  I arrived this morning at around 7:30 and was finished just before 2, I think.  For all those mathematicians out there, I had other appointments and waiting room time in there as well, so refrain from judgments about my inability to understand how long 3-4 hours is.  Currently, I feel nothing more than very tired and have a little bit of a headache.  Can't be sure what the future holds but all is well right now.

Here is my Costco plug of the day, you can pick one of these up today for $30 off and be almost as cool as me: BROCK  I have had one since Christmas and I think it is my favorite worldly possession.  It goes where I go and if you can't tell by the text of the hyperlink, I have named him and he is part of our family.

Now that I have healed up a bit and the swelling has gone down considerably, I thought I would share a glimpse of the outcome of the latest surgery so you can visibly see what I have been trying to describe.  Disclaimer: there is, in this picture, what used to be a normal chest/neck area.  Currently, skin from the chest is up towards the neck, the pectoral muscle has been moved and there is a nipple (hehe, I said nipple) kind of just hanging out in a new location all together.  There is also a glob of clear tape and adhesive and marking ink that is in the middle of my chest and was used to mark my position for radiation.  That has since been removed.  Anyway, if you think you might be offended by a relocated nipple or some scars I would advise you not to scroll down and look at the picture.

Carnage from 5/13/2014

It's go time.

Father's Day-2014

I have decided to break radio silence now, on the eve of my official treatment start date.  I probably should have posted earlier as there have been some delays in the actual start, but I didn't, so there you have it.  I went in last Tuesday for a final simulation where they set me up on the table as if I were getting the radiation treatment, but they only take x-rays to set my position and finalize everything in preparation for starting.  I also met with my radiation oncologist and talked with him briefly.  He was still working on the exact treatment plan and was not quite ready to turn me over to the machine just yet so he put off the start until Monday, the 16th.  No worries on my part with that adjustment, my feelings are that the more healing time my chest-neck gets, the better.  Side note: I call my most recent surgical body alterations "chest-neck" due to it being just that.  A section of my chest that has been relocated to my neck.  Complete with crazy fast growing chest hair amongst mostly hairless previously radiated sections of my old neck.  Eventually, radiation will disable the hair growing ability of that patch of skin but for now about once a week I must shave my chest-neck along with the two patches of hair that grow on my face.  It will be interesting to see if chemo wipes out what little hair is growing on my face or if I will retain my ability to grow facial hair like a 7 year old girl.

I am not looking forward to tomorrow morning, as it is with most of the things that I have to do these days but I must proceed forward.  The new mask they made me fits tightly.  Way tighter than the one I had last time and enough so that I probably will have to take one of the anxiety medications they prescribed me last time for nausea in hopes that it will help me cope a little better with the helpless feelings I get when I am alone in a room restrained to a machine with very limited ability to move.  If things get bad, I can always bend my knees upward and the radiation technicians see that through a video feed and will come into the room immediately.  But, with the mouthpiece in, I can't communicate except through grunting and hand gestures, so it will be hard to get the point across that I can't breathe or whatever the problem may be.  My mind heads to interesting places when I am undergoing treatments, but through all of it last time I never had an issue, so I am hopeful that I can make it through this time as well.  So starting tomorrow, I will start my daily radiation treatments and they will last 6 weeks (33 total).  My last one will be on July 31st.  Chemo will be administered every Tuesday and it will be the same drug I received last year, Cisplatin.  There should be a total of 6 of those given to me once a week during the course of radiation, but it is dependent on how low my blood cell counts drop.  I hope that my body responds well to treatments and that I am able to get all 6 in this time.  

My sister and her husband did something super cool that I found out about this weekend.  They designed some shirts in support of me and my ongoing battle and they happened to come in when I stopped by her house last week.  The shirts are super cool and for me a nice surprise and reminder that I am definitely not in this alone.  I am including a picture of the shirts in this post so that you all can see them.  She still has some that she is selling for $15 per shirt.  I think this is where I will abruptly end this post as I am so tired I can't see straight and I have to get up in about 5 hours so my dad can drive me back to Katy in time for my radiation.  From here on out, I will be posting more frequently as I like to chronicle all the changes that start happening as the treatments progress.

The dates are set!

My mask from last year

So this week was fairly quiet on the cancer front, but not without some important happenings.  Jessica had one request of me last week and that was to not schedule any appointments on Wednesday as she had a hair appointment and would not be able to go with me.  Apparently I don't ask the right questions nor do I relay any information back to her in the rare instances that she is not with me.  That's probably a fair assessment.  Can you guess what day I scheduled every appointment this week?  Yep!  Wednesday.  4 appointments.  You're welcome, wifey!  It actually turned in to a huge debacle, but we all made it through relatively unscathed with Jessica's hair being the only casualty.  The big accomplishment is that I went through the radiation simulation and we are now officially on the books.  The simulation is a rather unpleasant process wherein I lay mostly unclothed on my back in a room on a machine that I am guessing is a CT scanner or something very similar.  A large gathering of people perform various operations throughout the process which basically is setting my position and target areas for the radiation.  All of them are people that I know from last summer and they all expressed their sympathy for my situation and their regrets that our reunion is due to my latest battle with recurrence.  They had to make me a new mask and this is the most unpleasant part of the simulation.  For those unfamiliar, the mask is used to hold me down to the table in the same position each time I receive the radiation treatment.  It is hard plastic and is molded around my head neck and shoulders and formed during my simulation.  It starts out as a flat sheet of perforated plastic that is heated in a water bath to make it soft and pliable.  The flat sheet is then placed over me and pressed down and locked into the table.  This time around, it was a bit more unpleasant because it seemed to have a lot more water on it than I remember and it holds me to the table very tightly.  Water was dripping down my nose and into my eyes and that, coupled with the fact that I can't move and have a mouthpiece in my mouth made me very uncomfortable.  Luckily, this time it did not last near as long as the last time.  I probably wouldn't have been able to hold out much longer, but I managed to remain calm the entire time.  I have yet to have an overwhelming claustrophobic moment, and hopefully that trend continues.  It is a very helpless feeling to have my arms restrained and my upper body immobilized in the manner in which it has to be for the treatments.  I left the simulation with my full schedule of treatments.  I start on the 10th of June and will finish on July 25th.  Radiation will be every weekday in that time frame sans July 4th.  Let's get this party started.
My official schedule for the day was bloodwork, followed by medical oncologist, followed by simulation, followed by meeting with surgeon.  I was told to see the surgeon prior to the simulation because they were to take my stitches out before I did the simulation.  I went there early in anticipation of some type of ordeal, and there definitely was one to be had.  I got my blood drawn and then went and waited to get in to see the stitch removers.  They weren't there yet, but they were kind enough to call and tell the ladies to NOT let me leave to go see the medical oncologist because I had to have my stitches removed and the simulation performed as there were no more time slot  available for me to get that in.  So I got to sit there and wait and play some Sudoku.  When my official stitch removal specialist arrived she brought with her the wonderful news that i would also be having a scope performed after the stitches came out.  Outstanding!  I do love a good scoping.  Again, for those unfamiliar, my scopings involve me, some lidocain and a long tubular shaped camera.  The lidocain is sprayed in each nostril while I breathe in deeply and helps to numb the pathways about to be probed.  The camera then gets to travel up my nose and head to it's final destination somewhere in my throat.  It's that magical place where I can do nothing but gag uncontrollably and tear up while the doctor calmly dictates commands for me to follow.  I have grown used to these and have worked up certain ways to try to control my reactions, but sometimes they sneak up on me.  Everything was in good working order and aside from some swelling all appeared normal.

The finish last summer

Once I was finished with the simulation and stitch removal, I ran upstairs to try to get in and see the medical oncologist for my last appointment.  I waited a bit, but he was able to see me late in the day and go over the plan.  They are giving me the same chemotherapy drug that I received last summer, Cisplatin.  This was a bit of a surprise as the last conversation with him, he told me that he would likely use a different cocktail.  The reasoning behind it sounds solid.  They talked it over and decided that what we did last summer worked.  I had active cancer cells in the left side of my neck and the combination of chemo and radiation took care of that.  This recurrence was outside of the main radiation field and received very little, if any radiation.  With my type of cancer, radiation is the primary fighting agent with the chemo used as a supplemental treatment that has been shown to intensify the effects of radiation.  We consider what happened last summer a successful treatment and therefore we will go ahead with the exact same course of action this time around, just in a different location.  I will receive the chemotherapy once a week, this time on Tuesdays.  As with radiation, I will begin on the 10th of June.  Again, let's get this party started!

A quickening.

Today was a GREAT day.  Something that I was in dire need of and a nice surprise after so many days of conjecture, unknowns and anxiety.  Don't get me wrong, there are still many unknowns, conjecture and anxiety to be had, but today I got a lot of questions answered and I feel A LOT more optimistic about my plight.  It began early at MD Anderson in the medical center, where by 9 am my catheter drains had been removed and I had a brand new, untethered lease on life!  The neck one was no sweat, but the two in my chest definitely turned my stomach a bit.  There is just something about feeling movement inside the left side of my chest when they are pulling something out of the right side of my body that gets my stomach churning.  They didn't take the stitches out around the transplanted flap on my neck, but those should come out soon.  At the time, it was going to be about three weeks, but after talking with other doctors later, it will be much sooner than that.  Having the drains out feels like such an emotional and physical lift for me, I probably can't adequately describe it.  A funny little story to come out of that was luckily not witnessed by anyone but me, so I was able to walk out of there like nothing happened.  As Jessica and the PA who removed my drains sat in the room going over my medication list, I put my shirt back on and attempted to stand up from the exam table to get my water and get ready to leave.  As soon as I stood I felt my stomach go a little sideways and I immediately lost my balance and would have fallen, had I not turned very quickly and grabbed the exam table.  I apparently didn't make too much of a commotion because neither of them heard or saw anything.  As we walked out of the reconstructive surgery department I laughingly told Jessica about my near miss in the exam room and it was decided that we should go grab some breakfast on the way home.  Whataburger Taquitos are the best thing ever!!
Some quick backstory: while at lunch yesterday, Jessica and I talked about serious stuff that is tough to talk about but necessary at times when dealing with something of the magnitude that we have in front of us.  She asked me if I thought that this was truly it and that if I believed that I was dying.  I basically told her what I really believe in my mind: yes, I do.  I told her I would consider myself VERY lucky if i ever saw my 40th birthday (that is 3.5 years away).  That is not at all to say that I don't have hope that I would live longer than that, I have much hope that I would live much longer than that, but she asked a direct question and I gave her an honest answer.  We talked about various other things mainly whether or not we should sell our house and move, uproot the kids and the like that would come with a pretty substantial life changing move.  It was a good, lively chat to have over lunch with some useful decisions being made as a result.
Now we can fast forward to this afternoon when I met with my radiation oncologist, Dr. Gregory Chronowski.  I like him a lot, he is very informative and knowledgeable and I find it very easy to talk with him and he will answer whatever I ask to the best of his abilities.  Jessica and I asked him a variety of questions, mine more had to do with the mechanics behind the spread of squamous cell carcinoma of the tongue in people my age, but also options should recurrence #4 occur, should it spread to the lungs, etc.  Also included were yearly life estimates/expectations with various best/worst case scenarios and situations.  We also went over the plans for me this time and what I could expect and the high risk areas and overall big risks with what we are about to try to accomplish.  We know this: I will receive a heavy dose of radiation to the area affected in the most recent surgery and where the most recent tumors were located.  He is unsure whether he will treat me more comprehensively and also hit the right hand side of my neck with significant radiation in an effort to "pre-treat" the area and possibly prevent a recurrence.  There are additional risks associated with this and he is going to present my case again to their multi-disciplinary "tumor board" next week and see what the team of doctors think would be the best course of action.  It was great to hear his plan and hear how aggressively, but also carefully he plans to be with regards to areas of my body that have been radiated previously.  There apparently is a huge jump in severity and possibility of permanent side effects in radiating previously radiated parts of the body.  The overall outcome of the visit was positively awesome with his position truly being that he believes my cancer to be fully treatable and (surprising to me) fully curable, even at this point.  I believe he used the phrase cautiously optimistic, but he was very positive in his expected outcome and it was refreshing to hear.  My surgeon also popped in while I was talking with him and she had a couple of questions for me in addition to just wanting to check in on me and say hi.  I like her a lot too, and I feel like they are both operating with my best interests in mind but also with the overall goal of curing me of this disease but also leaving me with as good of a quality of life as possible.  Dr. Chronowski also wants to get this party started as soon as possible and the plan that we left with today is that I am going to go in for my simulation next week and I will start radiation on the 2nd of June.  That is just 3 weeks post-op, but he feels confident that my body will be ready and so does Dr. Pytynia (my surgeon), so I say lets do it!  I am all for getting this thing started and finished as soon as possible so I can get on with my life.  It will still be 6 weeks long with concurrent chemotherapy, but I will finish in mid July!  I like this plan a lot and am ready to get it started.  While I am sure the road ahead will be rough, I am now much more ready to face it head on and fight with everything I have.  With that I think it is time to call it a night, but I should reiterate: it was a GREAT day.

Drains are pure evil!

As the title of this post might foreshadow, I absolutely hate the catheter drains that are left in after surgery to allow fluid to drain outside the body instead of collecting inside with nowhere to go.  They serve a vital role in recovery and I fully recognize that, but it does not change my opinion of them.  I currently have 3 15 inch drains in my body that are just a pleasure to deal with.  One goes in my neck on the left side and snake through my body somewhere, I can't exactly tell where it goes.  With prior neck dissections, the drains went in at the base of my neck and went up to my ear and I could physically underneath my skin.  These drains go somewhere that I can't feel and probably don't want to know.  I will definitely feel where they go when I get them pulled out.  That is the other thing about drains, the dread that comes with knowing I want them out but then also knowing the horrible feeling that comes with having them removed.  It is not a very intricate procedure.  They are currently held in with some sutures at the immediate area where they emerge from my body.  One in the upper left neck and two right next to each other just underneath my right armpit.  The procedure is to simply remove the stitches holding it in place and yank on it until it comes out.  15 inches later, the drains are out and life goes on.  The first time I had some removed, I passed out and they were in the process of trying to resuscitate me when I awoke, dazed but alive.  The next time, I didn't have any issues, so I hope that tomorrow goes like that.  Bottom line, I want them out and will endure whatever I have to to experience the relief that comes with that wonderfully awesome occurrence.
Today was a turn the corner kind of a day.  I woke up and felt really good this morning.  My pain is well under control with just one pain pill every 6 hours or so and I probably don't even need it that often, I am just fearful of not staying ahead of it and it becoming a big issue.  My condition today versus one week ago are worlds apart.  The day started with a  the usual pill barrage, a shower (made ever so difficult by the fact that I have three drains to contend with as mentioned above), some bulb drainage and finished off with ointment application to all my stitched areas.  At this point, I am very Frankensteinesque in my neck/chest region and I would imagine a bit of a shock to see for the everyday person.  I have a pectoral muscle that has been surgically disconnected from my chest and reattached somewhere in my neck (hopefully they can tell me what it is attached to tomorrow), a decent size piece of pasty white skin that was removed from my right chest that was grafted over the skin void created at the base of my neck during surgery, and numerous stitch lines crisscrossing the entire area.  Probably not what Costco shoppers want to or expect to see in their daily shopping venture to the glorious warehouse chain.  With that, i transition into today's official activity: a trip to Costco to pick up some household supplies.  We went ahead and covered up the worst of the visuals with a gauze pad and off we went.  It was a good feeling to get out of the house, but I definitely know that I am still extremely limited in what I can do at this point.  A thirty minute trip to the store is about all I have in me right now, but I continue to grow stronger.  The moved muscle intrigues me but is also is a source of much of my mental struggles these days.  I can still trigger a muscle response from it, but man does that feel weird!  If I really got after it and tried to use that muscle like a used to, could I separate it from wherever it is now connected?  I can't imagine that would feel very good and would probably cause some major problems, so I don't plan on giving it a try.  Came back home after some lunch and had some quality recliner/bed time through the afternoon and still feel fairly well.  I imagine I will sleep very well tonight.  I have been getting some good sleep and only waking up once during the night, mainly to get out of bed to go to the bathroom.  I drink a lot of water during the day and it provides much in the way of a need to evacuate.  I also think it helps me in every way.  Along with all the juicing that I am doing.  I can really feel a difference after I drink a good hearty vegetable juice and I am doing that twice a day and I believe that helps me immensely as well.
Nothing very profound today, just a glimpse into the activities of the day here at Stobb manor.    Tonight will be dinner followed my showers and bedtimes for all with some hockey and baseball sprinkled in for good measure.  Tomorrow I should have some juicier stuff to share as I have three appointments and will get to talk to a couple of my doctors.