Something Lost, Something Gained

On January 4th, my friend Vivian and I headed to Houston for the 3rd round of chemo and more doctor appointments.  At that time, I also got to meet with my new dentist, Dr. Chambers.  I was really not a fan of the first dentist they assigned me.  She and I did not see eye to eye and I felt like I was being bullied, something else that I don't do well.  Plus she said I had to have 3 of my back teeth pulled.  Um.  No.  I had requested a new dentist way back when I requested a consult with the proton guy (see previous post), but had to end up going through the patient advocate to get one!

Anyway, I met with him and just loved him!  First of all, he's a Christian.  Secondly, he grew up with horses (not mandatory for a dentist, but a big plus for anyone in my life!), and thirdly, he was SO NICE!!!  We talked about why I was there, history of the cancer leading up to that day, etc.  When I told him I'd decided to do proton radiation, I thought he was going to bounce out of his chair!  He was THRILLED that I chose to do that and said it like 4 times!  I finally said that I knew why I was happy that I'd chosen it, but why was he so happy about it?  And, like Dr. Frank, he just kind of snorted and looked at me all wide eyed like he couldn't believe I'd asked that question and said, "Because!  Your side effects will be so much less severe!!"  So I guess Dr. Frank couldn't say that but Dr. Chambers could.  He works closely with Dr. Frank so he should know!  That made me feel better, I have to admit.  I wasn't sure if the side effects were really going to be better or not.  And the other good news is that he disagreed with the last dentist and said he didn't feel I needed any of my teeth pulled (something gained!)!  He felt like Dr. Frank could avoid the bones because the proton beams are so much smaller than the IMRT beams!  Praise the Lord!

As a side note, radiation kills bones.  So if I'd ever had to have had a tooth pulled on the radiated jaw bone, there's a good chance my jaw bone would have shattered.  Just not good.  So they pull teeth that could even remotely be a problem in the future.  But with Proton radiation, the beams are pencil thin.  In  fact, the process of how they make proton radiation is amazing!  I could explain it to you in big animal pictures, which is how I understand it, but the best way to understand it is just to read about it.  Very cool!!!  This is from the MDA website:

The best way to understand how proton therapy works is to take a look at the physics and engineering inside the proton accelerator, or the synchrotron, and the beam delivery system.

• The proton begins its journey at the ion source. Within fractions of a second, hydrogen atoms are separated into negatively charged electrons and positively charged protons.
• The protons are injected via a vacuum tube into a linear accelerator and in only a few microseconds, the protons’ energy reaches 7 million electron volts.
• Proton beams stay in the vacuum tube as they enter the synchrotron, where acceleration increases their energy to a total of 70 million to 250 million electron volts, enough to place them at any depth within the patient’s body.
• After leaving the synchrotron, the protons move through a beam-transport system comprised of a series of magnets that shape, focus and direct the proton beam to the appropriate treatment room.
• To ensure that each patient receives the prescribed treatment safely and efficiently, the facility is controlled by a network of computers and safety systems. The gantry can revolve 360 degrees, allowing the beam to be delivered at any angle.
• As protons come through the nozzle, a shaping device called an aperture shapes the beam and another device called a compensator spreads the protons into three dimensions and conforms it to the depth of the tumor.
• At maximum energy, a proton beam travels 125,000 miles per second, which is equivalent to the two-thirds the speed of light.
• From the hydrogen canister to the patient, a proton typically travels 313,000 

Amazing huh?!?!

The day before I had my 3rd chemo treatment, they did another MRI.  My oncologist was so happy when he got the results.  He said that the cancer at the original site (nasopharnyx) was either completely gone or so small that they couldn't see it, and the glands in my neck had shrunk dramatically (the "something lost" in the title of my blog)!  The right side went from 6 cm's to less than 1 cm and the left side had gone from 3 cm's to a little more than 1 cm!!  Now remember, that's after only 2 chemo treatments.  You can say anything you want to about medicine being the reason there was no cancer left, but I know NO ONE that has had their cancer killed with 2 chemo treatments.  That's God, ladies and gentlemen!!!

The side effects from the chemo treatments seem to vary and not chronologically either.  I had no side effects, except for being really tired for a couple of days, with the first chemo.  With the second chemo I had all kinds of unfun side effects of which I will spare you the details.  And I was tired longer with that one.  The third chemo treatment left me less side effects than the last one, but I have been tired much longer and I still get tired even 2 weeks after the treatment.  But again, if this is as bad as it gets, I've got it made!

My hair is almost gone, but my friends at church yesterday were so sweet about my hair covering (scarf and cap) looking so cute.  They are so sweet.

I went back to Houston this last week to get my simulation done for the radiation, as well as to meet with Dr., Frank and his peers so they could decide the best course of treatment.  I had other doctor visits as well, one with my oncologist.  He said that he might want me to do chemo with the radiation, which just about put me in tears.  It's not that chemo is the most horrible thing on earth, it's just going to be hard to do it and the radiation at the same time!  And quite frankly, I just don't want to deal with it!  But he said, if he does it, it will only be one chemo drug, and only half the dose, but he would want to do it once a week.  When he saw that I was about to cry, he looked me straight in the eye and said, "Vaughn.  We have once chance and one chance only to kill this cancer the first time.  I want to make sure we do that. If it comes back, it won't be good."

He had a good point.  He said he wanted to confer with Dr. Frank before making the decision.  Either way, I'm good with it.  I don't want this to come back.

When I met with Dr. Frank, he was amazed at how much more my left gland had shrunk since the last MRI.  He was actually kind of stunned lol.  He wants to do another MRI to see how much is left and to determine whether or not they need to do chemo with it.  He also probably has to recalculate the radiation lol.  Anyway, I go back for the day on Feb 3rd for the MRI.  It's just a day trip, up there and back.


I had to go to the Proton Center for my simulation.  A simulation is where they make you a mask and do the markings for the radiation.  The Proton center is a gorgeous, new, building.  The waiting lobby is actually down on the second floor.  Once you sign in on the first floor, you take this sweeping, half circular staircase down.  It has a gorgeous, HUGE, live waterfall/fountain with water running over rocks, and babbling downstream, with beautiful flowers and plants lining the whole pond area.  It's really breath taking and peaceful!  Once down there a nurse came to get me so I could sign all the consent forms.  We went into a little conference room where she went over everything, including the study I'm going to be in.

As we were talking it came out that she was a Christian.  At the end of our meeting she asked if she could pray with me!  I was shocked and amazed!  There has been only one other time a doctor or nurse has asked to pray with me!  Of course I let her, and then I prayed.  We hugged when it was over and I was so glad I'd met her.  When I came out of the conference room, a Christian song was playing over the speakers.  I was shocked!  Come to find out, that's all they play in the proton radiation center is Christian music!  And as I stood there, singing along with the song, I realized this was God's way of confirming that I'd made the right decision to do proton therapy.  Thank you for the affirmation Lord!

The second part of the visit wasn't as much fun.  As I said, I had to have a mask made that fits very tightly over my face.  It's to hold me perfectly still while I'm getting the radiation.  I understand the need for it, but together with the mouth stent they put in, it's very almost claustrophobic.  I understand the need for the mouth stent too though. It's to keep my mouth open a little bit and to protect my tongue from radiation.  So it is what it is.  What I was NOT good with was the wrist constraints.  First you lay down on the table in front of the CT scanner.  They put the stent in, then they put your wrists in these fur lined handcuffs!  Ok not handcuffs, wrist restraints.  Whatever!  From each wrist a rope leads down to either side of a board.  Almost like a swing.  They put the board under your feet which makes the ropes pull taught and you have no use of your hands and are literally frozen.  You can't move.  You can't talk.  It's pretty claustrophobic!  Plus it cuts off the cirrculation to your hands after a while.  And then they get the mask wet and pliable and put it on your face and press all the wrinkles out of it and it fits on your face very tightly.  They bolt it down with 19 bolts so you can NOT move.  Period!  You can't even open your eyes!  The stent in your mouth makes it very difficult to swallow and you gag from time to time (hold your tongue down and try to swallow - not easy!).

So there you are, on a table where you are bolted down at the head and your hands are tied down and you can't swallow very well.  And then they do the CT scan to make sure they've got everything aligned correctly. Of course they go out of the room to do it.  In the meantime, a piece of wax from the stent (it was just a wax form, they're making the real one now) somehow breaks off and starts slipping down my throat.  I realize that if I swallow, or even try to swallow, it's going to go down my throat and I'm going to choke!  I'm too afraid to even breathe very hard because I'm afraid it will be sucked down my wind pipe!  I certainly couldn't scream or wave.  So I just prayed really hard and tried to not panic until the scan was over and they could undo me.  As soon as my wrists were untied I  was pulling at the mask trying to get it off.  They took it off me, I sat up fast and spit the stent out, but the piece of wax went down my throat.  Thank God I was sitting up and it went down the right pipe!

I was terrified and told them I couldn't do the treatment if I had to have my wrists restrained.  They agreed that I didn't need to have them restrained for the treatments and they would talk to Dr. Frank.  I think it scared them too.  I also called the nurse today and asked her to speak with him as well.  I am praying that this issue is resolved before I go for treatment.


I am scheduled to start my radiation on the 7th of February for 6 1/2/ weeks.  So I will be leaving for Houston on the 6th.  As God always does, He has provided.  I have a very nice apartment to stay in.  Another dear friend had already told me God told her to pay for my housing while I was in Houston, but I didn't want her to spend a lot of money.  There's a little cheap motel that I could stay in that the hospital would pay for but I really didn't want to live there for 7 weeks.  It would have been very depressing.

During the visit at the first of January I met a woman and her 9 year old daughter who I just hit it off with!  Such NICE people!  And Christians!  And fun!  And Hope, the 9 year old, is amazing.  She has such a sweet spirit!  But she's really mature for a 9 year old in a lot of ways.  She has brain cancer and it's in her spine, and she's taking proton radiation so she was telling me all about how it works and what to expect.  This little girl is a light in an otherwise very dark place!  Please pray for her!!!  Pray hard!!!

Sheri (the mom) told me about the apartments they were staying in.  They're very nice and fully furnished, including linens and kitchenware.  They rent for $68 a day and that includes cable and internet and all utilities. It's a good deal but I wasn't going to ask my friend to pay that.  When I was praying one night about where to stay I told God that I would happily stay anywhere He lead me.  I also told Him I really wanted to live in those apartments, but I would do His will.

The next day I was talking with my social services person on the phone and somehow the fact that I was going to do proton radiation came out in conversation.  She said, "Wait. You're doing proton?  There's a GRANT for that!  It covers living expenses for people who are taking proton!"  She sent me the link with the app and the info.  Turns out they reimburse for expenses up to the government per diem for the city you're in, which is $109 per day for Houston!!!  Thank you Lord!  My friend is going to pay the rent up front for me, and I'm going to reimburse her.  God love her for hearing Him and being so willing to help!  She is yet another blessing in my already blessed and over flowing life!

After speaking to the leasing guy, turns out that I am going to get Sheri and Hope's apartment!  Sadly, they are leaving the 4th to go home.  I hate that I won't be able to spend time with them, but since I'm getting their apartment, she's going to leave me the food and extra stuff she bought for the apartment that she can't take on the plane with her!  It's worked out perfectly except that I won't get to spend time with them.  :-(

When I was there last week, I stopped by to visit and look at the apartment.  It's really nice!  Wood floors in the kitchen and bath.  Granite counter tops in both.  A flat screen TV in the livingroom and bedroom.  Big king sized bed.  Huge walk in closet, and nice bath!  Plus is has a washer and dryer!  And the MD Anderson shuttle stops there.  It's worked out beautifully.  But of course it would.  God did it!

So life just keeps moving ahead and God is leading the way.  I am so amazingly blessed by the people in my life.  I have friends who worry about me and feed me and entertain me and pray for me!  They feed my horse and stay with my dogs when I'm gone! They pay for things when I have no way to pay for them. I have a family who is there for me no matter what, who I am more blessed than anyone I know to be a part of.  I have a church that leads me and and teaches me and loves me and surrounds me with compassion and kindness.  And I have a God that never sleeps.  He never stumbles and is incapable of making a mistake.  He loves me more than I will ever be able to comprehend, and I know that I don't deserve any of it.  I am just completely blessed with Grace.

Grace:  The unmerited love of God.