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.