The Decision

It has been far too long since I've updated this blog and I apologize for that.  It seems that I am either running around getting ready to leave town for most of a week to get chemo treatments and meet with doctors, or I'm actually getting chemo treatments and meeting with doctors, or I'm too tired to do anything but lay around from getting chemo and meeting with doctors!  I am not the kind of person to sit still for long, so this is especially frustrating!  But, if this is as bad as it gets, I've got it made!

Because it's been so long since I've posted, I'll break this up into a couple of entries so your eyes don't get so tired from reading that they fall out of your head!

Let me back-track a little to my visit to MDA right before Christmas.  I had my second chemo treatment on the 16th, but one of the best parts about that visit was that I FINALLY got to consult with the proton radiation oncologist for head and neck cancer patients.  The regular radiologist that I had seen on my first visit basically just shut me down when I has asked about proton radiation.  She said it wasn't a good fit for me and that there was not enough known about it to make her comfortable recommending me for it.  The whole reason I wanted to go to MD Anderson is for the proton radiation!  I filled out a lot of forms and gathered a lot of backup documentation to get accepted into their financial aid plan.  I faxed over 50 different pieces of paper, and that doesn't count what I emailed!  I literally spent about 80 - 120 hours getting everything to them to be accepted.  And then I'm told "no," that I could not see the proton guy?  Again, that just didn't fly with me.  So I thought about it for about a month and then called to request a consult with the proton guy.  I just wanted to talk with someone who was educated about the treatment and could intelligently assess whether I would be a good candidate for it.  If he didn't think it was a good idea, then I would drop it.

I called one of my doctors' scheduling people and ask her to set up the consult.  She kind of acted like she didn't want to do it.  She hemmed and hawed but I pressed.  Two weeks went by and I didn't hear anything.  I knew time was running out if I wanted to get into that treatment program, so I called my patient advocate.  Within 48 hours, she had the consult set up!  So I met with him during the December visit.

As a side note, MD Anderson is amazing!  I have a team of doctors, health care providers, and patient service personnel.  I have a surgeon, an oncologist, a radiologist, a dentist, a speech therapist, a nutritionist, an audiologist, a patient advocate, and a social services provider!  They have this down to a fine art!

ANyeay, back to the Proton radiologist.  His name is Dr. Frank and he's literally a nuclear physicist, as well as a medical doctor.  He told me that they'd been working on the process to deliver this treatment to head and neck cancer patients for about 5 or 6 years and had actively been doing it for about a year, which means there are no long term survivability rates, no long term studies on side effects, etc.  He told me not to do the treatment if I was trying to lessen side effects because he could not tell me that would happen.  But, he said that he could tell me they wouldn't radiate my brain stem.  I said, "WHAT???  What brain stem???  No one told me about radiating a brain stem!!"  He went on to explain that the IMRT radiation (which is the standard, tried and true, radiation for my cancer) would radiate part of my brain stem.  I knew that radiating my brain stem could not be a good idea for many reasons!  He said radiation to the brain stem causes nausea and vomiting.  I could think of nothing worse than vomiting when you had a raw, radiated, burned throat.  That would be it's own special kind of hell.

He also said I would experience no hearing loss with the proton radiation.  He did his best to down play any positives of the radiation.  I'm sure it's because, legally, he can't talk it up.  There's no back up and he didn't want to set my expectations.  He said that MDA and one other hospital are the only 2 in the world doing this type of radiation treatment on my cancer.  It's a very rare cancer in the US so they have probably radiated a handful of people in the last year.  He was really nice though and I really liked him.  And he is so smart, I can't even grasp it.  His resume is astounding!

Anyway, after he spent almost 2 hours with me, examining and consulting, we were wrapping up and he asked me if there was anything else I wanted to ask.  I said , "Yes.  Other than the obvious fact that you're trying to cure people of cancer, what is the purpose of this new radiation?  Why are you doing it?"  He kinda snorted/gasped and said "Well to make the side effects a lot less severe!"  He didn't add the word "stupid" but I knew he was thinking it!  But all that time he'd been telling me not to count on the side effects being less severe and then he tells me that's the whole point of the new treatment!  Sheesh.

So I went home and prayed about it and thought about it and discussed it with family and friends, (and friend's family!) and prayed some more!  The bottom line was, do I want to have the tried and true radiation that they know cures 70% - 80% of the people that have it, but that also leaves you with a lessened quality of life for the rest of your life, OR, do I want to go with the new cutting edge radiation that will leave me (hopefully) a lot better off but that is so new that no one knows if it even works for the long term!  As I was praying about it one day, God put a thought in my head.  I am the perfect candidate for this experimental treatment.  I have no spouse, so if it doesn't work, I don't leave a grieving spouse behind.  I have no children to leave motherless.  And I'm a Christian!  I know exactly where I'm going if I die!  And if my participating in this study will help a spouse live, or a mother live, or an unsaved person live to accept Christ later, then it was worth it.  I finally came to the conclusion that I would have the proton radiation.

I got to go home for Christmas which was almost like a dream!  I have not been home to Midland since March and that is wayyyyyy too long between visits!  I usually go home about every couple of months.  But thanks to some dear friends, who I will always hold dear to my heart and can't even express in words what they mean to me or how grateful I am (I'm crying as I type this - that's how much what they did affects me), I finally had a car that would get me there!  I was still tired from the chemo the week before but who cares!  All I had to do was sit and drive!

As I pulled onto I-20 from the little highway leading into Midland, snow started to swirl on the roadway.  It's been a VERY long time since I've seen snow swirl and it just made me so happy to see!  And, of course, I had to thank the Lord that it hadn't started snowing until I was 5 miles from my parents' house!  It ended up snowing for 32 straight hours.  We had a white Christmas!  I haven't had one of those in MANY years!  It was perfect!  And so beautiful!

That evening, some high school friends were having a get together and had changed the date so that I could attend (what on earth did I ever do to deserve so many good friends in all areas of my life?!?!).  Another very good friend whom I've known since 8th or 9th grade picked me up so I wouldn't have to drive (another amazing friend that I can not express how much he means to me!).  We had such a wonderful evening!  It wasn't crazy or wild, just a nice group of friends catching up and laughing and enjoying each other.  We cooked weenies over the fire pit in the back yard in the snow.  We sat by a roaring fireplace in the house and laughed and reminisced.  I will remember that night the rest of my life.  It was magical!

The rest of the trip was spent resting a lot.  I did get to visit Mr. and Mrs Copper, who have been family friends since the day we moved to Midland on my 11th birthday.  And I got to visit with Kelley (their daughter who has been my friend longer than anyone, other than family, in my life) and her two grown kids.  I can't believe they're that old!  I took care of those kids when they were little kids!  Where does all the time go?  I got to have lunch with a friend who I had not seen in years.  It was so good to catch up with her!  But other than those few things, I didn't do a lot.  It was nice just to spend time with my family, and especially my parents.

We had a fabulous Christmas and I was amazed at how big Ellie (my 3 1/2 year old great niece) had gotten!  And talk!  My o my that baby can talk!  Miranda (her mother - my niece) told a story about Christmas morning at their house.  She apparently bought most of Toys R Us for Ellie's Christmas.  When Ellie got up on Christmas morning to see what Santa had brought her, Ellie, all wide eyed and mouth hanging open, looked up at her mother and said, "Is it my birfday?"

Miranda:  No baby, it's Jesus' birthday.
Ellie:  Where IS Jesus?
Miranda:  Jesus is in heaven.  He died for our sins and lives in heaven now.
Ellie (with horror in her voice):  Jesus DIED!?!?!

I have laughed over that since Christmas!  And I apologize to everyone reading this that's heard that story a zillion times!  They are just too cute at that age!  We've been fortunate to have little kids at Christmas in the family for the last 24 years, thanks to my sister.  When one got old enough to out grow the awe of Christmas, another came along to give it back to us.  We are so blessed!

I came home that Wednesday and on Saturday (new year's eve) I woke up to my hair falling out!  Dad gum it!  I thought I'd dodged that bullet!  Here I was, 14 days PAST the 2nd chemo treatment and I was starting to lose it!  I didn't brush it a lot.  I wanted it to last as long as it could!  My sister had just spent 2 hours cutting and highlighting it for me when I was in Midland, and I was NOT going to let it go to waste!  I didn't take it very well for a while, but I finally came to terms with it.  Most of it's gone now but I do have a wispy little bit covering my head.  I look like Brad Pitt in the Curious Case of Benjamin Buttons when he was an old man.  I've got a wig now (from MD Anderson's beauty shop - they're free!) and a scarf and some caps.  I want some more scarfs but that will come in time.  And of course, I have my ball caps!  It'll grow back.  If that's the worst thing that happens, I've got it made!

I look back on 2011 with a mix of emotions.  On the one hand I couldn't find a better year to say "GOOD RIDDANCE!" to, but on the other, God has shown himself in the last year in such a mighty way that it's been the best year of my life!  He has shown me that He is in control.  He is my provider and my savior.  He surrounds me with amazing friends and family!  He planted me in a church that I can not imagine EVER leaving, with a church family that is just as dear to me as my own!  He provides everything I need from a physical standpoint.  He is just flat amazing!  When I was having my second chemo a volunteer came by and was talking to me and somehow we got on the subject of all the friends I have and how much they've done and how much they mean to me.  She said, "I want your friends!"  I said, "I have great friends!  Everyone should have my friends!"

So now it's upward and onward!  I have a feeling 2012 is going to be FANTASTIC!  I can hardly wait to see what God has in store!  Whatever it is, I know it's going to be AWESOME!