Awesome radiation machine!

I am sure that this will change when the radiation burns show up, when my throat is aching, when I and can no longer eat solid foods, and my mouth is full of sores, but I love my radiation machine!  I feel like I am in a sci-fi movie whenever I am there. (Leslie thinks, specifically, sick bay on the Enterprise.)  Yesterday, Leslie took some shots of me and the state-of-the art machine. (For those who don't want the words, just the pictures, scroll down...) The reason the Stanford radiologist said that the treatment was just as good in Santa Cruz is because they have the same one.  The technique is called IMRT, which uses three-dimensional imaging.  Here is the Mayo Clinic’s description of the process.

Because this machine is more accurate and more nuanced, my neck area will not be the “scorched earth” effect of the traditional one-dimensional techniques and is the state-of-the-art for three-dimensional techniques. (I don't know what I am talking about, so don't trust this stuff, but I think it is true.) The side effects are all the same, but just less.  Here’s hoping! 

The radiation is amazing!  I can barely see the tumor anymore.  It was very red and very easy to see five days ago.  I gather I am going to have a pretty big divet in my throat.  It will heal.

By the way, I love my radiologist oncologist, Dr. Kim.  We both have puppies so we did dog bonding.  And all the staff down there at Santa Cruz Radiation Oncology are great. 

I hope you enjoy the photos!  I love them. If you want to (re)read the companion blog about getting this all set up, go here. Thanks, Leslie!

A good view of the formed-to-me head rest.

The mouthpieces and tubes are the first to go in.   They are protecting my fillings and tongue with this get-up.  Mask on the way...

The techs synching my mask down. The main thing is they have to exactly recreate my position daily and I can't move.

I'm holding tight on to ropes on each side that keep me firmly in place, with the comfy knee thing to help my back.  To the left are the two devices that take the images while the zapper does its magic.

Come on!  Is that not sci-fi? I have gotten used to the mouth piece (just don't put it too far down the throat is the key!) and I have never minded the mask.  Yes, I get to keep the mask.  It will be great to use in some future Krapp Family Players production, right? (For those who don't know, that is the nickname of the Karst home-theater group in which we have re-enacted many a musical.  I think we should do Dr. Horrible next.  This will work perfectly for one of the Evil League of Evil!)

My view when the zapper or imagers aren't over me.  See the green crosshairs?

I'm all set to go! Let the zapping begin.

This photo of the zapper can't begin to tell you how cool it is. When it is directly over me (they usually zap in about 8 positions), I get to see the ray change and it is absolutely trippy.  The sounds that come out of it are also really cool.  It just mesmerizes me.  And, it is healing me.  Gotta love that zapper.  (I get that I am saying this in week one, but truly, it is a wonderful, wonderful thing.)

The rad tech monitoring my treatment.  Five screens.  Impressive.

This is my new look (or part of it.) I have to try to keep my neck out of the sun as I will already get plenty burnt.  Darien lent me one of her hats (thanks!) to help.  Angela is giving me a scarf.  When Darien and I worked together at Kresge, the students often couldn't tell us apart—the fact that we do not look alike notwithstanding.  I can imagine that if I walked up there today, people would get confused again.  They are a bit lame that way.

The other, better (?) chemo lounge

As I mentioned, Lynn found my chemo lounge to be not up to snuff.  I visited her at her chemo lounge to see this "improved version".  As promised, they did have a foot masseuse.

It does look nice...

Lynn also promised wifi, and here is the proof of that

In our chemo lounge, they have the chairs facing each other so we can all chat.  There are other areas that are more private for those don't want to interact.  But at this place everybody is along a wall, old-time beauty salon style.  All you have to do is take away the IVs and add the hair dryers and, voilà, you have the mental picture. (Leslie didn't take the picture—and she is the photographer of these photos—for privacy concerns, of course.) But here is their view:

Now Lynn pointed out that the decorations were a little bare-boned compared to  the usual array of plants and food they have laid out.  But, still, I would rather look at people. And, I am sure it is usually much prettier than my place. But, hey, I like to talk so I am just fine with my juice joint.  Isn't it great that we both happened (via insurance, of course) on perfect places for ourselves?

Chemo lounge photos

These pictures should have been with the chemo lounge entry, but Leslie had the card reader in LA.  But, it gives you the general picture.  It was a little chilly in the place, so I did generally have a blanket.  Beyond that, it was just hanging out working on the computer like at home.   There were four other chairs in this room, each occupied by a very nice woman.

That is my new Mac Air on my lap.  Leslie let me get it 'cause I got "the cancer".  Isn't she sweet?

Generally, I typed with one hand so as not to disturb the IV, but it was quite possible to use both hands.

I spent so much time in this bathroom, I figure I should take a shot.

Anti-nausea drug management

So, I am much better today.  The reason is that I didn't take that drug that controls for nausea but turns you into a crawling zombie (walking wasn't an option).  The name of that drug is prochlorperazine (generic for compazine).  I don't recommend that drug.

Far better, so far, has been the ondansetron (generic for zofran).  Zombie isn't one of the side effects, just constipation, headaches, hives, itching, breathing problems, etc.  I have been trying to manage the possible constipation via metamucil and lots of liquids.  I haven't had the other side effects, so maybe I will be lucky. This particular drug is expensive, so Health Net did a weird thing:  my doctor prescribed 30 for a month; they only gave 9 for 22 days. My doctor had warned me about this problem, so I got her office advocating for more.  They succeeded, but Health Net charged me a $35/copay for the extra instead of the $5 copay for generics.  Thus, I just had to spend a half an hour getting my money back from Health Net.  I was able to get $30 of it back.

Speaking of money, looks like my little fender bender (it was really just a tiny dint) is going to cost $1269.  The whole auto repair racket is just behind the tow truck racket in my estimation.  But, it is what it is.  At least I got my 30 bucks back.

Doing Better

I had my first radiation dose and it went fairly quickly.  I am getting better with the tongue thing.  It didn't bother me much. The radiation only takes a short time.

The drugs to control the nausea are just really tiring me out.  So, I am going to go watch some favorite video...and space out.

The fun is over...

I mean up to the point that my treatment started, there were lots of interesting and new things.  Got to meet a lot of people.  Got a lot of love and caring and had the capacity to really appreciate it. Had plenty of energy.  Yes, last week was not good in many ways, but I was still "me"—just the anxious version.

Today, I am not me.  Tired.  Listless.  But, I am up for watching movies.  I just watched "What About Bob?"  Well, Ellie watched it and I slept through it.  But, I saw a few key scenes.  I only plan to watch things I know so the sleeping won't matter...

Anyway...

Hanging in the chemo lounge

For those who haven’t been in a chemo lounge, you have missed something!  I understand that some chemo places give you a private room.  But, I think this collective experience is probably the norm.  Basically, the room is filled with a number of Laz-y-boy-type chairs (think Friends—I can just imagine Joey and Chandler with their IV drips now…) Very comfy.  There are several other people there getting chemo at the same time.  Some people chat a lot (I was chatty), some people sleep, some people read, some people write a blog (that was me when I wasn’t chatting).  It’s fairly mellow, but with a sad undercurrent.  How could it not?

I love lounge chairs.  In fact, in my French 1 class I wrote these lines when describing my living room: Ma chose favorite dans la salle est mon grand fauteuil noir.  Leslie n’aime pas la chaise.  Mais, je vais mourir dans le fauteuil ! (translation :  My favorite thing in the living-room is by big black lounge chair.  Leslie doesn’t like the chair.  But, I am going to die in the lounge chair.)  Anyway, I was comfy.

Kendra was the nurse who tended us, filling up our IV with various things.  First, a lot of hydration, then two anti-nauseous drugs, then steroids that maximize the effects of the aniti-nauseaus drugs, then the cisplatin—the chemo drug—followed by one more bag of hydration.  The day took about 6 hours.  The anti-nauseous drugs are supposed to last 2-4 days.  They fool the censors in the brain into thinking you have not just ingested a bunch of poison.  I like Kendra.

I was in a room with four women.  I went to the restroom about 15 times, carting my little IV with me…  The three other women went, collectively, 4 times.  I felt like a bit of a freak.

The place has a refrigerator with juices and sodas and water and lots of treats and chips and cookies.  Help yourself. I took a bag of sun chips—the French onion kind. They also have a lending library if you forgot to bring a book or something to keep you occupied.

My friend, Lynn, dropped by to say hi.  She’s has been going through the same experience for months, so wanted to lend her support.  She found our lounge wanting.  At her joint, they have a massage room and a roving foot masseuse.  According to her, it is a much prettier room.  I am going to go on Thursday and see how the other half live.  But, I was fully happy with the accommodations.  Also, I got a brief visit from my friend, Angela, and her young son.  Kids aren't welcome because they are germ carriers, so that was a quick visit. I appreciate the effort from both of you.

It really didn’t feel like anything during the process.  And, I kept my date with a friend after to have a cocktail. (I didn’t drive.)  I felt just fine.  We took Zig to the beach and all was well with the world yesterday.  Those drugs to control the poison must work.  Ok, I was a little loopy, it is true.

I sat by a lovely woman who broke my heart.  I didn’t ask her if I could blog about her so I am reluctant to reveal any telling details, but she has been battling cancer for several years. Originally, it was a cervical cancer diagnosis, but she is now dealing with lymph involvement.  She is 42 with two pre-teens and a husband. You can just see in her eyes how desperately she wants her life back, and the fear that she may never get it. We talked a lot about everything – her life and passions, what she misses the most, and the strain on her family, her employment situation and fears. I left there not worried about me, but truly worried about her.  Her course of treatment will be soon done. I am very happy for her that is true. If you read this, I am rooting for you!  (ed note Jan/2015:  We became friends.  I would occasionally drive her to an appointment or pick up her kids from school when she or her husband could not.  She died.  She made a lovely video to all her friends for her memorial service.  She had a lovely bit about me, "the last friend that I made."  She was just one of several of my friends who died from cancer that year.)