Thursday, December 29, 2016


In honor of tomorrow being my last day of treatment, I figured it was time to dust off the blog and record this pivotal experience in my life.

Recap: as you know, I was given a 3-part treatment plan which started with induction chemotherapy, then surgery to remove the tumor, and finally radiation to kill any tiny spots we can't see and also to prevent recurrence.

I completed the first two steps and have recorded my chemo and surgery experiences at length on the blog, so here we go with radiation.

A group of about 8 of us started the treatment at the same time. We had to watch a whole video and have an in person lecture about the side effects and how to care for yourself properly while this treatment tries to break you down.  I have to say, this made me a little worried.  We did not have fancy video warnings for chemo and surgery, and boy those side effects were awful.  It appeared to me that this whole radiation game was not going to be holding back.  The interesting part is that the side effects don't show up for several weeks, so at first it seems like nothing, then WHAM, all the sudden you wake up and realize that video you saw back on day one was not messing around.

My schedule was radiation therapy every day M-F, usually around 11am for 6 weeks, or 30 treatments.  On Wednesdays I also had appointments with Dr. Rosenthal (my radiation oncologist) and Dr. Kies (my chemo oncologist) and had my actual chemo treatments.  Throwing chemo into this mix meant that I did not get to experience those first few weeks of bliss before side effects show up.

Chemo and I are not friends.  I was so nauseous and sick and had several days each week where I did get out of bed the nausea and dizziness were so bad.  I am thankful I have my feeding tube because even when I was sick Brian could keep me on my medications and keep me hydrated and fed.

Let's see, how about a little rundown of a typical Wednesday since they hit everything:

  • 9am: Brian and I arrive at MD Anderson and proceed to the Lab to have my weekly blood work done.  It takes the nurse two tries to find a good vein, but we get there in the end and 2 tubes are full of my blood.
  • 10am: Brian and I head to my appointment with Dr. Rosenthal.  He meets with me weekly to check how I am handling the side effects of radiation now that they have kicked in.  He gives me weird medicated foam dressings for my neck and chin since the burn is getting pretty bad.  He looks in my mouth and offers sympathy once he sees all the sores.  He and his team also talk to us about nutrition and mental health during these visits.  I like Dr. Rosenthal.
  • 11am: Brian and I head down one floor to receive my radiation treatment.  I have a card that I scan when I arrive, then when it is my turn I head into the treatment room and remove my clothes from the waist up.  I get on the table and Joel and Jace (my two really sweet radiation techs) put a silicone guard over my neck scar, give me my mouth stent to protect my teeth and keep my tongue in place, and strap me into my face cage.  They make sure I am lined up properly (this sometimes takes a while since I was losing weight and therefore making my body a different size and the radiation has to be absolutely precise so as to get at my bad spots while not damaging the good ones).  I always appreciated their thoroughness.  Once I am in the right spot, they head out and the huge machine I am on comes to life and circles all around me shooting tiny green life saving lasers at my cancer site.  The whole thing, from walking in to walking out, usually takes 15 minutes.  
  • 1pm: We head next to see Dr. Kies for our weekly check-up with him.  He is so very kind, and really listens to our concerns and tries to make things as comfortable as possible while maintaining the strict plan that this will be curative - period.  Love it.  We talk about my nausea and how I had to jump out of the car twice to throw up on the side of the street. He changes my medication after 2 weeks and then finally just cancels my last treatment altogether.  He says based on my blood work we got great results and there is no reason I should be in so much distress when we have already achieved our goal. Did I mention I love Dr. Kies?
  • 4pm: We get back from eating somewhere (well, Brian eats and for a few weeks I eat soup but by the last few weeks, I just sit and watch while he eats) and head to my chemo treatment.  I check in with the Ambulatory Treatment Center, then I head to the Infusion Center to start my IV.  Remember how it took the nurse 2 tries to get blood?  Well, this is worse.  They need a nice big vein for chemo drugs and my veins are shot after all of this.  Most people just get a quick IV put in at the actual chemo place.  I have to go to the Infusion Center because I need the best of the best to find my veins.  Long story short, it usually took about 4 sticks in my arm before they find one.  One time they used the bend of my arm so I couldn't move.  Several times they did it in my hand, which is really painful and does not hold up well with chemo.  They always have to use the ultrasound machine to see my veins at all. Once my IV is finally in, I go back to the Ambulatory Treatment Center and get my chemo.  They are always running 1-2 hours behind schedule.  Always.  I get my pre-medications (nausea and a steroid), then chemo, then some fluids.  2 of my 5 treatments went well.  2 of them saw my arm or hand (wherever the IV was) swell up which means the medicine is no longer going into my vein, it is now just filling up the area around it and my hand or arm starts to look like a balloon and it is SO incredibly painful.  The last time, we ended up not even doing the fluids due to pain. Chemo sucks.  (I feel like I have said that before)
  • 10pm: We finally get home way later than we anticipated and literally fall into bed to get the needed sleep to head to radiation again in the morning.
And that, my friends, is my experience.  I have my final treatment tomorrow morning and we fly home tomorrow night and don't have to come back until late February.  My current state is not great - I am pretty confident in saying that once again, I have exceeded expectations and managed to get every single side effect.  I currently cannot talk or swallow without intense pain.  I have sores all down my tongue and in my mouth.  I have nasty mucus being formed in the back of my throat that I have been told I need to spit out rather than swallow to help with nausea, plus, gross.  The problem is that my tongue is not great at the spitting motion (remember I only have half a real tongue trying to teach my arm tongue how to keep up) and now with all these sores it is so awful.  If I hit my tongue sores on my teeth...oh, I bit my tongue earlier today and found myself crying like a baby on the bed.  My "radiation sunburn" is pretty bad as well.  It just showed up this last week and it is gross.  I have dressings I have to wear, which make me look like a crazy person, but they work, so I happily wear them.  Overall, this has been a very long process and I am SO glad that tomorrow is the end and I am headed home!  I am told side effects will remain for 2 weeks after last treatment, but then will slowly start to improve. 

Some pictures for your viewing pleasure:
Getting chemo early on in the radiation process
My beautiful niece Penelope came with me to my last radiation before Christmas, and here she is scanning me in with my card

In this pic, I have my mouth stent in and my mask is on - you can see Jace and Joel snapping me into place so I can't accidentally move and mess it up

In this one, you can see the machine.  It rotates around me and shoots out radiation (haha) - it administers radiation to the precise locations that Jace and  Joel tell it to via computers and cameras in the next room
This just cracks me up - this is the first stage of my dressings for the burn.  They give you big rectangular sheets of medicated foam and you cut them to fit the area you need.  I have since given up on trying to do the upper lip - not possible to stay on.  The neck part is most important...
...and you can see why.  Look at how bad it has gotten!  I took this picture today right before putting my dressings back on after radiation
This is me right after I walk out of the radiation treatment room.  You can see the marks on my head from the cage to understand how tightly they strap you down.  Even more reasons for people to stare at me in public as if I am some crazy monster.  
My radiation ends tomorrow, which means my 3-part treatment program that I started back in August is finally finished.  It always seemed so far away, so impossible to achieve.  It was a bumpy road with more lows than highs, but once I get my scans back in February with the good news, it will all have been more than worth it!