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".

T-cells...attack!!!!

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.

Go to work little t cells

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

"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.

You just never know....

They talk about the best laid plans of mice and men.  Well, I don't know how well mice plan but the plans of this man at least are sometimes uncertain.

I had been doing so well lately.  My energy was improving, I have a little peach fuzz hair coming back on my head, my pain levels had increased but I was dealing with it.  Christmas was wonderful.  We got to talk to our two missionary sons, one in Spain and one in Chile.  What a joy to see their smiling faces and hear their laughter again.  My daughter had come from Oregon with her husband and our darling granddaughter.  Our son had come home from Boston.  Life was great!  Then suddenly I began to feel pretty wiped out.  I noticed the beginnings of a fever.  I decided to lay down for a nap but by the time I woke up I felt worse rather than better.  My temperature kept increasing which meant, another trip to the emergency room.  I just love that place.

So, on Christmas afternoon around 3:00 we took off for the emergency room again.  I was not feeling my greatest.  I guess it must have shown since they moved me to the head of the line.  Or, maybe I just get priority treatment for all the frequent flyer miles I have there.  Who knows.  Anyway they got me back pretty quick.  My fever was high enough that it didn't take them long to decide that I would have to stay in the hospital.  They wheeled me up to the 7th floor.  The charge nurse came out to meet us and said "Haven't you been here before?"  It's not a good thing when the nurses begin to recognize you at the hospital.

Snow Goon

So, I spent the next four days in the hospital.  The doctors finally decided I had pneumonia, an infection in my facial wound, and strep throat.   All at the same time!   Oh, and a yeast infection too.

Well, after four days in the hospital I am doing better  but the doctors in Houston tell me that I need to wait a week and become infection free before they can start treatment so I guess my treatment will be bumped back a week.  Not what I wanted but I guess it will have to do.

On a happier note, it has been heavenly having my daughter and son in law here with our sweet granddaughter.  She really wanted to make a snowman which we did.  She has kind of demented uncles (influenced by reading so many Calvin and Hobbs books)  so it ended up being a snow goon.  I hope she isn't damaged for life.  It has also been wonderful to have our son here on break from medical school.  He is a great young man.  We love having him around.

I guess we have a week to burn now.  Maybe we will use some of the time to investigate reconstructive options for my face.  Maybe the snowman could use some work as well.

In the meantime, thank you for all your prayers in my behalf.

A root canal frenzy

God bless endodontists

So, radiation is a blessing and a curse.  I believe that radiation treatment has preserved my life this long so that I could find a definitive solution that wasn't available a year ago.  But, it hasn't been kind to my teeth.  Yesterday I spent several hours with my dear friend Daniel Burr, an amazing endodontist.  I don't want to show up in Houston with infections.  They tell me that would be grounds to eliminate me from the study.  High levels of radiation damages blood vessels.  In my case the bone has been damaged as well as my teeth.    Yesterday Daniel and I decided to find out just how many teeth might have died due to loss of blood supply.  It was an exciting day.  I had 8 more root canal treatments yesterday, a new record for my friend to start on one patient.  Essentially all of my back teeth on the right hand side but one had died and a few front teeth as well.  That brings the count on root canal treatments to ten in the last two weeks.  I am so grateful to my friend for taking so much time to take care of me.  And to my patients I want to tell you, I'm sorry that drilling is so unpleasant. It rattles, smells bad and is just generally unnerving.  I have done this to people for 26 years and I need to be more sympathetic.

Slightly used mandible for sale

On an interesting note, JoLynne has been researching how my jaw might be rebuilt once the cancer is defeated.  There are amazing things going on.  One of the pioneers is a Dr. Marx from Miami.  He is using stem cells and cadaver bone scaffolds to grow new jaws.  He grows it in the patients back and them moves it over when it is ready.  My friend the oral surgeon just downstairs from me just returned from Chicago listening to him speak.  Where do I sign up?  I need one of those.

Cast off the anchor ropes, raise the sails!

Monday was my last chemotherapy ever I hope.  Only time will tell but I can hope.  I have been bald so many times now I have almost forgotten what I look like with hair.

As is often the case, the full impact of the chemo doesn't hit you until a few days later.  So, yesterday was a hard day physically.  I just felt run down from the moment I got up.  Everything hurt more and my wounds just wouldn't dry up.  When I have a hard day physically it makes it hard to have a good day emotionally.  They go hand in hand whether I like it or not.  I came home at lunch just dragging.  Sweet JoLynne got home shortly after I did.  I'm a little embarrassed to admit that I had been at home crying, but oh well.  JoLynne is amazing.  She never scolds me, just puts her arms around me and tells me "it's going to be alright, it's okay to get discouraged"  I don't pretend to understand why things are the way that they are but when JoLynne puts her arms around me I can physically and emotionally feel the stress flow out of me.  She has something magical about her.  I am so grateful!  The problems feel the same size but somehow I feel bigger with her there by my side

Ah, picc lines, so much

Today I feel much better.  I just woke up feeling better.  They took out my picc lines today.  After four months I was more than ready to be done with them.  It so so strange to have them pulled.  It doesn't hurt but the lines are pretty long.  They kind of just "reel" them out of your vein.

My treatment date in Houston has been moved up to December 29th.  The researchers called and said that my T-cells grew very nicely and are all done.  They have 12 batches of genetically modified T-cells sitting in the freezers, waiting to be injected back into me.  All that is lacking is the FDA to come and sign off on the batches and a free hospital bed.

May God's wind lead us safely there. 

With my picc line removal and the treatment date moved up I feel like a ship casting off.  "Cast off the anchor ropes and raise the sails"  There is something reassuring about being tied to an anchor rope but the reality is you never get to your destination until you lift the anchor.  Raising the sails has risk but the time comes for taking risks if you want to get anywhere.  I'm ready!