Wednesday, January 28, 2015

"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.

Friday, January 23, 2015

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.

Wednesday, January 21, 2015

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.

Saturday, January 17, 2015

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.

Thursday, January 15, 2015

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.

Saturday, January 10, 2015

Ninja turtles

Well, it has been four days since the T-cell infusion.  I haven't mutated into a Ninja Turtle yet, that is a little disappointing but oh well.  Actually I feel really good.  My face is a little more swollen and tender.  Normally that would be a worry but they told us that if the T-cells did what they were designed to do that the tumors would swell when they were attacked so maybe swollen is a good thing!

I have had such a hard time gaining or holding onto my weight, especially recently.  Not being able to eat and swallow well by mouth doesn't help matters.  Anyway, I am working on that.  JoLynne wants to lose some weight.  I have a tube that I use to put food directly into my stomach.  I tried just connecting the tube between us
for a direct transfer.  I'm not sure if it worked.  She looks thinner to me.  I will try it again today.

Actually I started tracking my calories.  My son told me about a program called "Lose it".  It is a phone app but it's pretty amazing.  Mostly you just scan the bar codes of the food you are eating and it puts it right in.  So I set my current weight, 152 pounds and my target weight, 180 pounds.  Well, the program didn't know what to do with that.  I guess that is what you get for trying to gain weight with a program called "Lose it".

Thursday, January 8, 2015


Well, I should have posted sooner.  I'm sorry.

After multiple flight delays out of Salt Lake we finally arrived here in Houston.  I think we fell in bed at 4:30 am.  Ughh.  Monday I had a physical and consultations with the doctors.  They were amazingly nice.  There were two doctors, Dr. Wang and Dr. Gottschalk who spent over an hour with us explaining the procedure, what the side effects might be, what the hoped for outcome might be, what other studies were beginning that might be applicable to me.  They were so good to us.  I can't think of the last time a doctor spent an hour talking with me.  Wow!

I passed the physical with no problems and they were thrilled to have me here to participate in their trial.  I am the second patient to qualify for the study.  We didn't really asked how patient #1 is faring, it isn't relevant frankly.  Anyway, they told us to return on Tuesday at 9:00 am to start the infusion.

Monday after we left our consults I had a call from a Dr. Marx in Miami.  He is a very famous oral surgeon.  I had sent him an email with pictures of my wound and asked if he could help me.  Reconstructing my face is no small matter.  We have talked to multiple doctors in Utah and they all tell me how incredibly complex my reconstruction will be.  Anyway, he called and talked to me for over 30 minutes.  He said that treating advanced osteoradionecrosis (that is what I have, severe radiation burns that have destroyed my jaw and my skin on that side) is what he does for a living.  He felt that I was very treatable and talked at length about how he would do it.  We have an appointment in Miami on January 27th to meet with him.  After we got off the phone JoLynne and I just sat in the car and wept.  Just before this started JoLynne had an impression.  "Sit down, buckle up and prepare for quite a ride"  She felt like long prayed for miracles were about to begin.

Tuesday we showed up not knowing really what to expect.  Usually my chemotherapy infusions take all day.  So, there were three doctors and about that many nurses there to watch or help.  Finally they showed up with this really little syringe.  It had maybe 2 cc of golden fluid, less than 1/2 teaspoon.  There was lots of paper signing and witnessing etc.  Then the infusion.  I think it took like one minute.  JoLynne asked later how so little fluid was going to be enough to do the job.  The doctors told us "If this goes as planned those little T-cells will seek out your tumor and when they find it they will begin to replicate themselves like crazy until there are enough to do the job"

With immune therapy they hope to boost your immune response.  In a few cases it goes overboard and initiates something called a cytokine storm.  Basically your immune system goes crazy and you die.  So, they were watching me really close.  I had my own nurse for the next four hours, she basically never left the room.  When they genetically engineered these cells they built in a biological cut off switch  into the genes.  If everything is going wrong they can give you a drug that turns off all the infused cells.  The doctor told us that the cut off switch was embroiled in a patent dispute and that technically they couldn't use it because of the court battle.  But, he said, "I have the drug here in the hospital and if you start going downhill I will use it and deal with the legal complications later."

Well, with all that said, I had no ill side effects.  Except that I was sleepy but I think that was from not sleeping enough.

Blurry Houston Temple
Wednesday I felt great and ran a mile on the treadmill and lifted weights and went to the temple that night.  Today I felt great too.  I ran another mile on the elliptical and lifted weights again.  My face is hurting a bit more.  I don't know why but they did tell me to expect the tumors to swell when the T-cells attacked them.  Perhaps that is the reason.

Last night at the temple was so good.  I am pretty emotional these days.  Last night was just such a good session.  I spent quite a bit of time crying in the celestial room after.  I just had this overwhelming feeling that God loves me and that the priesthood blessings given to me and the miracles we have prayed for these last three years are about to be fulfilled.  I am so grateful for a loving Heavenly Father.

Well, here we sit, praying for T-cells.  Who would have thought that would ever be the center of my prayers but so it is.

Tuesday, January 6, 2015

Go to work little t cells

my T cell transfusion just happened. "Go to work you little sweethearts. There is much for to do"

Sunday, January 4, 2015

"Where no man has gone before"

Well, today we leave for Houston.  It's hard to leave our children but we are grateful and our older son Jarom and his wife Natalie are willing to come and stay with them.  Still, we will miss them.

"Where no man has gone before"
On the other hand, we are full of hope that this treatment will finally bring us the answers that we have prayed for these last three years.  Conventional cancer treatments have simply proved ineffective.  But, they did save my life this long so I am not complaining.  The research that they are doing in Baylor simply wasn't available 3 years ago.

I don't know why my journey has been so convoluted.  Honestly we expected to be cured the first time around.  We had faith.  I don't always understand God's ways.  I guess that is why they call it faith.  Even though I don't understand I still trust Him.

Sometimes we are all so quick to judge our lives with the perspective of a moment.  I think that God sees a bigger picture.  I have a story that I heard once that I really like.  Here it is:

One day in late summer, an old farmer was working in his field with his old sick horse. The farmer felt compassion for the horse and desired to lift its burden. So he left his horse loose to go the mountains and live out the rest of its life.Soon after, neighbors from the nearby village visited, offering their condolences and said, "What a shame.  Now your only horse is gone.  How unfortunate you are!. You must be very sad. How will you live, work the land, and prosper?" The farmer replied: "Who knows? We shall see".Two days later the old horse came back now rejuvenated after meandering in the mountainsides while eating the wild grasses. He came back with twelve new younger and healthy horses which followed the old horse into the corral. Word got out in the village of the old farmer's good fortune and it wasn't long before people stopped by to congratulate the farmer on his good luck.  "How fortunate you are!" they exclaimed. You must be very happy!"  Again, the farmer softly said, "Who knows? We shall see."At daybreak on the next morning, the farmer's only son set off to attempt to train the new wild horses, but the farmer's son was thrown to the ground and broke his leg.  One by one villagers arrived during the day to bemoan the farmer's latest misfortune.  "Oh, what a tragedy!  Your son won't be able to help you farm with a broken leg. You'll have to do all the work yourself, How will you survive? You must be very sad".  they said.  Calmly going about his usual business the farmer answered, "Who knows? We shall see"Several days later a war broke out. The Emperor's men arrived in the village demanding that young men come with them to be conscripted into the Emperor's army.  As it happened the farmer's son was deemed unfit because of his broken leg.  "What very good fortune you have!!" the villagers exclaimed as their own young sons were marched away. "You must be very happy." "Who knows? We shall see!", replied the old farmer as he headed off to work his field alone.As time went on the broken leg healed but the son was left with a slight limp. Again the neighbors came to pay their condolences. "Oh what bad luck. Too bad for you"!  But the old farmer simply replied; "Who knows? We shall see."As it turned out the other young village boys had died in the war and the old farmer and his son were the only able bodied men capable of working the village lands. The old farmer became wealthy and was very generous to the villagers. They said: "Oh how fortunate we are, you must be very happy", to which the old farmer replied, "Who knows? We shall see!" 

I will try to keep this blog updated as we progress through treatment.  Thank you again for your prayers, your faith and your friendship.  They mean the world to us.