The News You've All Been Waiting For...

So much to share today.  I guess I should start with last night.

I've been sending Dr. A emails with all our questions. He called last night to answer as many of them as he could.  Some of the more important answers: We won't have a prognosis until we see how my body responds to the chemo.  There are different types to try, but with each one, your chance of success becomes less. If we wanted a second opinion, he recommended someone in Seattle, but he said the best place to go for head and neck cancers in MD Anderson in Houston.  I know a lot of people on the Head/neck Cancer Surviors page have been treated there.  He is going to have my tumor tested for HPV. He says right now the treatment protocol is the same regardless, but that is slowly changing, so it would be good to have that information. He is also going to have the tumor genetically mapped. That means that as more targeted treatments are developed, we would know what might work for me.  Also that puts me in the pipeline for trials and experimental if that should become necessary.  Finally, he is concerned with my suddenly worsening apnea. Although it is likely just due to the bronchitis, he wants to make sure that it isn't the tumor(s) affecting my vocal cords and influencing my airway. If that was the case, he would put the trach back in. I was not really thrilled by that option, as you can imagine.

That was a lot to digest.  The further down this path you travel, the few choices of route there are, and many are the road less traveled.  Serafina made the observation that you have to live long enough for the next treatment option to come around.

This morning we met with the radiation oncologist. He was very patient, very knowledgeable and very honest. Radiation a second time is not something they really recommend, but sometimes it is the best choice. In my case, that is hard to say. Physically I am not really up for another surgery, but, on the other hand, more radiation will make further surgery, should it become necessary, more difficult. The voice box is fragile and doesn't really appreciate being directly radiated.  The two tumors they are looking at are right on the edge of where I had radiation last time-- one just inside the field and one just outside. The purpose of radiation is to kill stuff, and it does that indiscriminately.  In @20% of cases, there will be necropsy, death of tissue and/or bone due to the damage to the red blood cells.  As I already know, radiation itself is no walk in the park. He is proposing 30 radiation treatments.  However, the radiation technology has evolved since 2008. What took 15-20 minutes to deliver in 2008 now only takes about five minutes.  It is a lot easier to survive five minutes choking on your own saliva.  Yes, I would also develop that horrible glue-like saliva again.  I also would have even worse dry mouth.  This is one area where not being able to swallow is a plus.  What saliva I do have stays in my mouth.  Drool isn't pretty, but neither is sand mouth.  That trapped saliva also helps protect my teeth.

Chemo is a whole 'nother thing, so to speak. We will need to meet with the chemo oncologist to discuss that plan. Dr. A told us that typically it is two treatments given during radiation, spaced about three weeks  apart. Depending on how my body responds, there could be a third dose, but that if it doesn't respond to the first two, there is little point in doing a third. The radiation oncologist said today that the best case scenario is that the chemo/radiation kill it all and it never comes back.  That it is cured.  I've heard that word before.  My previous doctor told me that with head/neck cancer is the only way you know you are cured is when you die of something else. Nice.

There are other outcomes, of course. If it doesn't kill it, I'd still be looking at removal of my larynx through twice radiated tissue, which will take a long time to heal. Talking, such as it was, would be with the electronic thing held up to my throat.  It wouldn't be very clear because I don't have a tongue. I would be a neck breather from there on out. The upside is I could eat without worrying about aspiration.  The downside is water would be my enemy.  I think if my neck didn't already look/feel so bad, I might lean towards the surgery since it is more of a sure thing -- as much as anything is.  However, right now I can't imagine.

I have no delusions that radiation is going to make my neck feel great. This time I have the advantage of having Mia, and Karen and Zachary all on board before we even start.  The doctor today encouraged me to have as much treatment as I can get in order to minimize the damage as much as possible.  I didn't even start physical therapy until months after my radiation ended and massage even later than that.  I am sure that that will help.

So here is where we stand: tomorrow I go up to OHSU for them to take a peek -- up my nose/down my throat and make sure I don't need my old friend the trach tube back.  Assuming that I don't, perhaps we can get some better meds for the acid reflux and maybe even something to help me sleep.  I'm not much of a medications person, but sometimes you do need better living through chemistry.

Monday I go to have my mask made and they can start mapping for radiation.  They put me in for the last appointment of the day so that if it takes extra time to accommodate my neck they have some leeway. Because my neck is so swollen and tight, my head won't actually go back when I try to lie flat. I'm not sure how they will adapt to that, which is why we brought it up.  I do know that they are amazingly patient and compassionate there.  I never had a bad experience during radiation.

Sometime during the ten days to two weeks it will take for them to make my map, I will meet with the chemo oncologist. We will decide which protocol will be best, the side effects, etc. Again with the choices.  Glad to have choices, but wishing I was choosing between fabric swatches, or paint samples and not picking my poison, literally.

The doctor today also asked why we weren't returning to the radiation oncologist we saw before.  That is hard. I love her as a person.  She was always kind and went the extra mile to help get the breast reduction approved. She always answered every question and did any thing I asked for.  However, I keep coming back to February, saying this is exactly how it started the last time (she even wrote that I said that in the case notes). Back to August when it was supposed to be the 'victory lap' for my dismissal after five years.  That day my mouth was so painful, yet she said, "nothing back there gets my hackles up." Maybe her hackles need a tune up.  In fairness, I saw her twice, the ENT five times and the dentist twice.  No one caught it despite me pointing it out, BUT I also never asked for a biopsy.  When Dr. Tom did want to biopsy it in early September, I said wait and lets see if the Kenalog paste works.  Not a good idea.

Much to process.  Trying to figure out somewhere for Karissa to be tomorrow. Trying to schedule appointments for massage, physical therapy, acupuncture, chemo and daily radiation, along with Karissa's usual activities.  All about me.  I don't like it to be all about me.

I want "cured" and not like a ham.  I want this to get it all and it never, ever come back. I want to make peace with my eating and speaking such as it is, and get on with my life. I don't like the specter of cancer hanging over me all the time. Or the specter of heart surgery, for that matter. Or deciding when enough is enough.