Thursday, February 19, 2015

A VERY GOOD DAY!

Today I finally heard back from our doctor in Houston, Dr. Wang.  She called me just as I was finishing patients for the morning.  We have been pretty anxious about this call.

So, she said that the scan showed no tumor growth.  In her words, "This is the best possible outcome we could expect at this point in the trial."  She told me that because my cancer creates bone, it will take time for my body to remove the bone tissue that had been made,

This is the part that had Dr. Wang really excited.  As part of the study last Tuesday they gave me a chicken pox vaccination.  The genetically altered T-cells have been programed to be responsive to the chicken pox virus.  So the idea was that giving me a vaccination would cause the T-cells to become more active.  Well, by Tuesday night I was hurting quite a bit.  By Wednesday morning at 5:30 am the pain had become excruciating.  It felt like someone had cut a hole in the top of my head and was pouring boiling water in the right side of my head.  I was literally running around the apartment holding my head in both hands.  I needed to get some pain medication but I was hurting so much I couldn't compose myself to get it ready.  Sweet JoLynne came running out of the bedroom to my rescue.  So after dumping a bunch of pain medication in my stomach tube JoLynne sat and rubbed my feet trying to get the pain to ease off.  It finally did, thank heavens.  Then the drainage from my wound really ramped up.  The bandage just kept filling up with drainage.

So I don't think that they expected such a dramatic response to the vaccination.  Frankly I didn't either.  Now it has been several days.  My face is still burning but not as bad.  Still lots of drainage.  I told Dr. Wang what was happening.  She was pretty excited.  She took my case to a conference today and presented it.  The other doctors were excited as well.  She now wants me to keep a daily diary of everything I experience.  She wanted JoLynne to retrieve my yucky bandages and gauze out of the garbage and send it to Houston for analysis.  She said that given my response we should have no hesitation in scheduling our reconstruction surgery in Miami and she wants them to preserve all the bone they remove and have it frozen and sent to Texas for analysis.  After talking to her on the phone it felt like they believe they have discovered something important in cancer treatment.  She was very upbeat.
God answers prayers

JoLynne said "You know, Dr. Wang is so nice, God would have no problem revealing something important through her."  I agree wholeheartedly.   JoLynne and I spent a good part of the afternoon crying  We are so grateful that God is providing this miracle to preserve my life.  The day of miracles has not passed.

Tuesday, February 17, 2015

The waiting game

Well, we met with our doctors today.  We hoped that they would have the results of our scan but no such luck.  They are now saying it will be tomorrow.  Well, I know that God wants to teach me lessons in patience but I really wish He would hurry up.  :)

Sunday, February 15, 2015

Genetic engineering and automobiles

Car with genetic engineering
Do you remember the movie Groundhog day?  It seems a little like that.  We keep leaving and then waking up back in Texas.  Maybe I need to get just one day right to get out of this.  That might be hard for me.

Friday I had a new MRI taken.  The technician asked if I had ever had one before.  I couldn't help it, I  just laughed.  The MRI was normal, a little tube and lots of noise.  As we were leaving the hospital we saw a rather unusual car.  Maybe it's because we are hanging out in the genetic engineering part of the hospital.  I'm wondering if perhaps they got their hands on this car and this was the result.

Yesterday JoLynne and I went to tour the battleship Texas.  I don't know why it seems so appropriate that we should be looking at a battleship.

Bring on the big guns
Today was Sunday and we went to church with our son's best friend Alden.  It was great.  A wonderful young ward.  Full of life and energy.  Alden's son reminds me of our kids.  Really cute and kind of solid.

JoLynne' fancy flowers
Well, we have till Tuesday before we will know the results.  It is hard to wait.  I still feel at peace.  I really have no idea what they will say but I feel in my heart that we are in the right place so it will all turn out somehow.

I picked JoLynne's Valentines flowers today as we were walking down the train tracks.  We're keeping it simple here for the time being.

Wednesday, February 11, 2015

Another trip

Tomorrow we leave again for Texas.  Friday we will have a scan and Tuesday we should have the results.  Usually I really get nervous leading up to these scans.  Maybe that will still come but right now I feel an amazing sense of peace.  My bishop came over tonight and with my son Jarom gave me a priesthood blessing.  Maybe that is why I am feeling so calm.

We have a wonderful doctor in Texas.  Her name is Lisa Wang.  I get the feeling that she isn't very religious, but she is exceptionally kind.  She emails me on a regular basis just to see how I am doing.  Last time we were in Texas she kept trying to lend us her small appliances so that we wouldn't have to buy them.  So, in response to her last email I told her a story.

I was at work.  One of my patients had brought her young daughter Olivia along with her to the appointment.  As I was talking to the mother Olivia said "How come you talk like that"  (My speech is rather impaired these days)  Before I could answer Olivia pipped up again and said "Oh, I remember, you have cancer.  We pray for you every day."  Then she said, "I  like your bandaid.  It's really big."

i told doctor Wang that story.   I think she was a little taken back that I would have a practice where my patients would pray for me.  I told her, "It's no wonder that I love my job so much."

I feel so blessed to have people who care about me.  These last three years have been hard but they have had good in many ways.  I find my heart is softer than it was.  I hear about people who suffer and it hurts.  I cry a lot.  Not very macho but it is what it is.

Well, it's off to Texas.  We will keep you posted about our scan results.  Thank you Olivia for your prayers and all of the rest of you too.  I know that God hears and answers prayers.

Monday, February 2, 2015

Wow, a vacation that didn't include an emergency room

Me with this gorgeous babe I picked on the beach
We just returned home from our "secret" cruise.  It was only four days but it was lovely.  We have had a lot of trouble with vacations for the last little while.  I realized when we returned from this cruise that this is the first vacation we have gone on in a year that didn't have to be ended abruptly with a trip to the emergency room.  We are so grateful!  We are getting a bit paranoid.  JoLynne even bought trip insurance this time, something that we never do.  If I had come down with problems it would have paid to have me transported to medical help and a few other things.  Boy am I glad we didn't use that insurance.

She even has cute feet
It was a simple trip.  We spent a day in Key west where we rented bikes and explored the island and played on the beaches.  It was really fun.  The next day we were in Cozamel Mexico.  That island was a bit too big for bikes so we rented a car.  We went to the bakery and bought yummy Mexican bread and found a restaurant with really delicious food and then played on the beach until the sun went down.

It was the super bowl on Sunday.  I have a confession to make.  I didn't even know who was playing. Our family is so into football.  So, just about everybody on the ship was watching the super bowl and we were playing rummy in the empty dining area.  All in all we just had a great time.

You know it's nice when you have garbage just for coconuts
We put our children on a plane to fly home and JoLynne and I are headed back to Houston to meet with our doctors again.  We should be home in Utah tomorrow night for about 10 days.  After that it is back to Houston again for a chicken pox vaccination.  It's kind of a cool idea.  They programed the DNA in my new T-cells so that when I get a chicken pox vaccine the new T-cells go crazy because their programed to be triggered by chicken pox but attack my cancer instead of chicken pox because that is all they are capable of attacking.  At least that is the idea.  We will get a scan at the same time that will tell us how effective this all has been.

I began reading the Book of Mormon again.  Sunday I read the story about Nephi and his brothers trying to get the brass plates.  Things aren't going too well.  Laban, who has the plates, isn't eager to give them up.  He has already told them no and stolen all of their silver and gold.  Nephi's brothers have seen and angel and still they murmur.  Nephi then makes a speech that I like.  He says, God can defeat Laban and his 50 men, for that matter he can defeat Laban even if he had 10,000 men.  Don't you remember Moses and the armies of Pharaoh?  Nephi then goes into the city, not knowing beforehand what he would do.  And God provides the way.

Pretty nice for January
So, first of all, God can defeat this cancer.  Statistics mean nothing.  What is too hard for God?  Secondly, we are going into this "not knowing beforehand" but we trust that God will open the way.  We just need to have faith.  So that is what we are working on, faith without any doubts.