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.

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.

"We can rebuild him. We can make him better than he was before"

Haven't spent that much yet, but working on it.

If you admit to knowing what that title is all about you must be about as old as I am.

Here is a funny story.  JoLynne went to the library the other day and rented the video of "The Six million dollar man" just so she could watch that part at the first and hear them say those immortal words.  We ended up watching the whole episode.  Ummm...It wasn't quite as good as I remember

Speaking of rebuilding, we are now in Miami.  We came to meet with a famous oral surgeon named Robert Marx.  He has done a lot of work in reconstructing people's faces after radiation damage.  The meeting went very well.  Dr. Marx and his team were so kind.  At one point they had me remove my bandages to look at the wound directly.  Most people when they see it for the first time are pretty taken back.  Not these guys.  They went right to work, photographing, taking x-rays, pulling on my skin all over the place to see where I had extra.  After looking for a bit, the micovascular surgeon put his hand on my shoulder, looked me in the eyes and said, "We are so glad you are here.  We can help you.  We have treated much worse than this with great success.  Oh, one more thing, you need to gain weight."  I guess that means more ice cream in my stomach tube.  I wonder if you can overdose on ice cream.

The real question now is timing.  Dr Marx said, and we agree, that the most important thing is to control this cancer.  They don't want to do anything to interfere with my cancer treatment.  He and my oncologist in Houston are going to talk today or tomorrow and try to work out a schedule.  Once we have the scan in mid February we should know for certain if the treatment is working.  That will help us to know our next step.

Little Havana

My version of dominoes

In the meantime,  JoLynne rented us a little apartment in Miami.  It's pretty dang cool.  I think it's called "Little Havana."  Everything is in spanish, the food smells amazing, there are monuments all over to Cuban war heroes.  We went walking today and stopped and watched a bunch of old people playing dominoes.  There was some disagreement about the game and lots of raised voices.  I don't usually take my dominoes so seriously.  I thought that playing dominoes meant stacking them in a line and then pushing the first one over and watching the others fall.

I love the Temple!

Thursday night, (last night) we went to the temple.  It is a bit of drive but so worth it.  Every time I go something wonderful happens.  I guess I shouldn't be surprised given where it is that I am going.

The house of the Lord in Houston

So, last night we went.  We were early for the eight o'clock session so I stopped in the bathroom.  In there was this older black man fiddling with his suspenders.  He said something to me about his suspender, which honestly I didn't understand, then he asked me why I had a bandage on the side of my face.  I told him I was battling cancer.  At this point he left his suspenders, threw his arms around me and hugging me in this big bear hug said, "God is going to bless you my dear brother.  He will do it!"  Then he walked out of the bathroom
with his suspenders still only half fixed.

Now, I don't know what an angel might look like, but last night my angel was a beautiful black man in the bathroom with suspender problems.

More promising signs

Nurse JoLynne

We met with the doctors again yesterday.  This time it was with both research doctors, Dr. Wang and Dr. Gottschalk.  They were both very interested in the swelling around the known tumor sites.  JoLynne told them that she had been peeling off bone from inside my wound.  I'm not sure if I mentioned that before.  We have several areas of known tumor.  One of them we can see plain as day though the gapping hole in the side of my face.  It looks like a mound of bone that grew out of my natural bone.  The other day JoLynne was poking at it with her tweezers while changing my bandage and chunks of it started coming off.  She kept at it for some time until she had a gauze full of dead tumor bone laying there.  Sometimes I am grateful that I have no nerve in that part of my face.  I just kind of assumed that this was dead tumor caused by radiation 18 months ago.  The research doctors felt that was unlikely after so much time and were more inclined to think it was being killed by T cells.  The doctors decided that they wanted to take a look inside of my wound.  I warned them that it wasn't pretty but they wouldn't be dissuaded.  So JoLynne took off the bandages and you could kind of see their jaws drop.  In the awkward silence that followed JoLynne said "Few women have been able to see inside their husbands head quite like this"  That broke the tension.  We all had a good laugh.  That JoLynne, she is a funny girl.  Anyway, they took some samples from the wound and JoLynne put the bandages back on.  The doctors wanted to know where she had her nursing training.  She smiled and said, I'm not a nurse.  I have a degree in zoology.  Eric is my only patient.  Anyway, swelling around the tumor in my temple continues.  The amount of drainage from that area has more than doubled in the last few days.  All of those are encouraging signs.  I hurt more too, which I don't like but if that means it's working, I will deal with it.

A sneaky cruise:  Don't tell!

On Monday we fly to Miami to meet with a reconstructive surgeon.  He is a very famous oral surgeon and we feel so grateful he is willing to see us.  After that we are flying Adam and Elizabeth to Miami and going on a four day cruise.  We told our doctors here we were going to Miami for the reconstruction consult, they were okay with that.  We didn't tell them about the cruise.  Sometimes it is easier to ask forgiveness than permission.

Waiting and praying and dreaming of Abigar

It has now been about 11 days since my infusion.  This is uncharted territory for me.  I have been through chemo enough to know what to expect more or less and when it will hit.  This is different.  I'm certainly not sick like I was with chemo.  I am very grateful for that.  I am tired though.  My face is swollen and the wound in my face has shown a sharp increase in it's drainage.  I have speculations about what is happening but it is hopeful speculation.  We won't really know anything empirical  until the Scan in mid February.

In the meantime, JoLynne and I seem to find things to fill our days.  We have been working out for about an hour a day together.  That has been enjoyable.  We have been to some museums and the zoo and the temple several times of course.  It's good.

Picture painted by my daughter Shanelle of Abigar

When my children were young I would make up stories for them about a dragon named Abigar.  They loved those stories.  I would mostly tell them when we were on trips.  They would all cram together on the back bed in the motorhome, we would turn out all  the lights and I would have them all close they eyes and tell me the first thing that they saw when their eyes were closed.  When they had all told me these random things I would begin the stories and somehow weave what they had told me into the stories.  Sometimes that took some creativity but it worked.  If we were with other families on the trip sometimes their children were squeezed in on the back bed as well.  Those were wonderful times and happy memories.  I must have told hundreds of stories.  There is no way that I could remember them all but I have long intended to sit down and write some of the stories that I do remember.  So, I have been working on that.  Maybe my children will read them to my grandchildren.   Better yet, maybe I will one day have my grandchildren squeezed on a bed somewhere with the lights out and I will tell them Abigar stories myself.   Already, my daughter tells her daughter Abigar stories that she is making up.

Maybe it's all my imagination but it really feels like a literal battle being waged in the side of my head where the tumor is located.  We are praying for the outcome of that battle.

Praying for miracles

Well, a quick update.

I love this picture.  It is an actual T cell attacking cancer

We met with the staff Tuesday and had a blood draw.  They like to track the numbers of genetically modified cells wandering around in my blood.  They don't have results yet but they did tell us that measuring peripheral blood is not a good indicator.  Apparently the T-cells cluster in the spleen, liver and especially around the targeted tumor.  So the ones wandering around in the blood are just kind of like scouts looking for any stray cancer cells that might have gotten away.

Except for Sunday when I felt a little flu like, I have been feeling great.  I have a tumor in the temple area that bulges out a little.  During chemotherapy that bulge diminished a bit and became softer.  After the T-cell infusion the bump enlarged a little but it is still pretty soft.  My jaw seems swollen too.  I have had an increase in pain as well.  When we visited with the doctor yesterday she seemed quite encouraged by the swelling.  As she said "I hope that means it is working".

And now two T cell on the attack.  

It's interesting when we first met with her she was very low key about the study.  It is after all a phase one trial, that is the very earliest type of trial.  Really nothing has been proven at that point.  During our first meeting she was very careful to downplay any expectations we might have.  She kept saying things like "This is a dosage trial, we aren't really expecting to cure anybody" and things like that.  Now that we are in the study and doing so well, she is almost giddy.  She keeps crossing her fingers and smiling a lot.  Needless to say, we have been hopeful all along.  We know who is really in charge and that He can choose to perform a miracle when and where He pleases.

I think I have mentioned before how much trouble I have had gaining weight.  I had never really tracked my calories until now.  It suddenly becomes apparent to me how little I had been eating.  Now that I am paying attention and eating more I am doing much better.  I gained 8 pounds this week.  Pretty impressive.  Of course JoLynne is making milk shakes with ingredients like, Ice cream, peanut butter, whole milk, muscle protein powder.  1.5 cups has over 600 calories.  Yummy!  To bad I can't taste it.  I have been exercising about an hour a day so most of the weight gain seems to be muscle.  That is nice.  I was looking kind of like a POW there for a while.  It's nice to get some muscle back.

Thank you again for your prayers and your faith.  We miss being home and hope to be there again soon.