Blessed with a wonderful wife.

Okay, I just want to go on the record here.  I don't want to brag but I may have the best wife a man could ever ask for.  JoLynne is simply amazing.  I am SO SO grateful for her.

Yesterday was a difficult day.  We finally got hold of the researchers from Houston to talk about our MRI results.  Dr. Gottschalk is the principle researcher there and we talked to him on the phone.  It was his feeling that the MRI showed progression of the cancer.  By the written protocol associated with his experiment his hands are tied.  So essentially we cannot at this time go forward with the HER2 trial.  He is a kind man but he is bound by how the experiment was written.

This is such an emotional let down for me.  When they told me in Houston that my blood result was the best that they had ever seen I was so hopeful that we had finally found the miracle that we have searched so hard for.  Now with this MRI it seems that door is closing for us.  It breaks my heart.

My son Seth is so wise.  He is visiting right now from Boston.  When we picked him up from the airport he told me.  "Dad, we are going to find the way.  I truly believe that.  I believe that if God doesn't want you to go through a certain door that He will close that door to you.  At that point or soon thereafter he will open another door that He wants you to go through."  I have worried so much that I wouldn't be smart enough or in tune with the spirit enough and that I might miss the next door when it presents, I wouldn't see it for what it was.  I told Seth what I was worried about.  My sweet Seth just looked at me and said, "Dad you are plenty smart and I have no doubts about you being in tune or worthy.  Look dad, if God has gone to the trouble of preparing a path for you to escape it would make no sense for Him to hide it from you.  You will know that path what it presents."  I have leaned on those words from Seth.

Okay, with all that said, the door to HER2 seems closed at least for now.  I asked the doctor if he can hang onto those cells in case we need them in the future.  He told me that of course he would.  That he would keep them for at least 4 years.  I then asked him what he thought I should do.  He told me "Eric, there is a new drug on the market called PD1.  It is showing great promise.  I really think you should consider trying that.  It isn't approved for your disease, only melanoma right now, but maybe your oncologist there could get an exception made for you to use it in osteosarcoma."  It is so interesting to me that my own oncologist had mentioned the exact same thing to me just two days earlier and had in fact already started the paperwork to seek approval.  Also, Dr. Wang, another researcher from Houston had mentioned it also about a month ago.  And finally, my brother in law from back east who is a super smart physician had mentioned something to that effect as well.  It seems like another door is opening.

PD1 is what Jimmy Carter is on right now.  Cancer cells have the ability to hide from the body's natural immune system.  It is almost like a cloaking device for your Star Trek fans or in more general terms it is like Stealth technology.  The idea behind PD1 is that it turns off the ability of the cancer cells to hide and therefore let's the bodies immune system find the cancer cells.

A few months ago, Shanelle found an article about using oxygen to help the immune system better find cancer.  The research is early but it is coming out of Boston.  Another way that cancer hides is by depleting oxygen around the tumor.  Cancer is able to live in pretty low oxygen conditions but the bodies T-cells need lots of oxygen.  Essentially the body's T cells find the cancer and when they get close to it they kind of fall asleep because there isn't enough oxygen.  So, they don't do their job right.  The initial research was done on mice.  The mice were intentionally given breast cancer.  Some were then put in a chamber with 60 % oxygen and the rest were just left normal.  Basically the ones in the chamber got better with no drugs, the others didn't.  They have not yet done the tests on humans.  Two days ago when JoLynne was saying her prayers she felt like God wanted us to reconsider this research on oxygen.  I called my dear friend and physician Steve Berry and he gladly hooked me up to have an oxygen mask in hopes that it might help.  I have long ago learned to never ignore my wife's impressions.  So now I am on oxygen.  Perhaps this is another door opening.  Here is a link to the article.

http://www.nbcnews.com/health/health-news/could-oxygen-make-cancer-therapy-work-better-n317446

Yesterday night I was exhausted.  With all the talk with doctors in Houston I was feeling the strain.  JoLyyne and I love to walk together.  As we walked JoLynne stopped me and said. "Eric, look up.  Look at how beautiful the clouds are."  They were beautiful.  Then she said, "Eric, we are going through some hard times right now.  I think our motto needs to be "Look up"  Boy I love that woman.

Last night I was having a hard time sleeping.  I think it was the steroids combined with the new oxygen mask I am wearing.  Anyway, I got up at about 1:00 am and just couldn't go back to sleep.  I even walked around the cul de sac for a while barefoot in my pajamas.  I just couldn't get my mind to settle down.  Finally about 3:00 am sweet JoLynne, tells me 'Eric, lay down and I will rub your feet until you fall asleep."  She proceeded to do that and I was finally able to fall asleep.  She is just amazing.  I love her so much.

More reasons for faith

Yucky eye

Well, I will be honest.  This has been a hard week.  About a week ago I was eating lunch when quite suddenly I had a large discharge of puss from the corner of my left eye.  This is the eye I had surgery on.  It was probably a tablespoon of puss, really yucky.   A great way to ruin your appetite if I ever had one.  We called all of our doctors offices but they were all out and their staff said "Go to the emergency room"  I don't like going to the ER but we went anyway.  At the ER they did tests for infection and took a new CAT scan of my brain.  Honestly, as I was walking into the ER I didn't feel very good.  I was even having a little trouble walking.   I have also had lots of pain lately, especially headaches.

Anyway, they told me that I had an infection and wanted to do IV antibiotics.  They also said that the CAT scan did not look good.  They said that tumor had grown significantly and was pressing on my brain and not a little.  It was applying pressure all over, enough to push my whole brain 10 mm to the left.  Especially concerning was pressure on my brain stem.  The brain stem is nothing to mess around with.  It controls things like breathing, and heart beat and a ton of other stuff.  Kind of important functions.  Some of the pressure was from tumor, much of it was from swelling.  The doctor felt like the swelling was enough that my life was in immediate danger.  He recommended that I have IV steroids to bring the swelling down immediately.

I have been avoiding any sort of steroids because the researchers in Houston tell me that steroids kill off my T cells.  Honestly I just didn't know what to do.  Because the hour was late in Houston I couldn't contact them.  I don't want to mess up my T cells but I also didn't want a life threatening event in my brain.  So, when the doctor left the room I simply said a prayer.  I may not know what to do but God does.  So I asked Him what I should do.

For some reason, of late, I have had the most amazing connection with Heaven.  It is almost as if I have a telephone when I pray.  In all of my life I have never gotten answers so quickly and so clearly. Many of the impressions are much too sacred for me to share in a blog.  I am so grateful for this connection at this time in my life.  This night was no exception.  A clear answer came right away.  The words that formed in my mind said simply "Eric, please do both the antibiotics and the steroids.  This is important and urgent and don't worry about the T cells, it will all be fine."  So, off we went on the new drugs that they wanted to give me.

Within hours I started feeling a lot better.  I could walk easily again.  My pain began to go down.  My mental clarity improved.  And, interestingly enough my answers from heaven became even more profound and clear as the swelling in my brain went down.  Wow, this connection with Heaven is almost beyond belief.  I am so thankful.  The other day I asked God, "Why am I getting answers so readily right now?"  Almost immediately the answer came,  "Eric, you should know that I love you.  Your answers are coming so readily right now because you are worthy and you need them.  I would have thought that would have been obvious"

Anyway, we started the week needing an MRI to continue in the study in Houston.  This was an important image for us.  If my cancer has progressed I may be taken out of the study.  So, I am good at MRI's  I would estimate that I have had 24-36 MRI's since this began.  They really don't bother me.  Thankfully I am not claustrophobic.

Well this was officially the hardest MRI that I have ever had.  They put me into the machine and it was fine.  Halfway through I was pulled out while they gave me a contrast die to look for cancer better.  This is a liquid injected into my veins.  Anyway, the technician left to go back into the control booth and the machine began re-inserting me into the tube.  Suddenly I was overwhelmed with the most terrible nausea.  Realize that at this point my head is in a metal cage and can't move and I am bound to the table.  I started barfing my guts out.  The vomit was running down my face and filled up my sinuses.  My head was laying in a pool of oatmeal vomit.  It was in my ears and all over my face.  My mouth was full and the robotic machine voice kept saying, "Do not move, do not swallow"  I had a panic button I could have pushed.  I probably should have pushed it but I kept thinking, "I know that they only have so much time to get this image after the dye is injected.   I just need to hold still"  It was so awful.  I lay like that for about 40 minutes.  Finally it was over and the machine spit me out.  The technician came back into the room and saw what had happened.  He felt so badly.  He told me, "how in the world did you hold so still.  You held more still that most of my normal patients."  I told him that I tried really hard so that he could get a good image.  Anyway, it was not easy.

He gave me a cup to rinse my mouth and some towels to clean myself up with.  I went to my locker.  Truly, through these last four years I have tried really hard to never murmur with my afflictions.  That day was really hard.  I was kind of emotionally overwhelmed.  I sat on the bench in the locker room and told Heavenly Father "Why does everything have to be so hard for me.  I'm really not a bad person.  Why can't this ever be easy"  Again, an answer came almost instantly.  It said, "Eric, I am so sorry for your suffering.  You should know that in the future you will have a chance to help others who suffer greatly.  What you are going through right now will help you in the future to help them better.  There is a purpose in what you are going through.  I will try to be gentle with you dear Eric."  Needless to say I was pretty tearful  by the time I met JoLynne in the waiting room.

So, the MRI was not good either.  It showed essentially what the CAT scan showed.  We will talk to the doctor in Houston today about it.  I still have faith that God has prepared a way for me to escape this awful cancer, I just don't know exactly how that will happen right now.  I pray that I will recognize the path when I find it.

It was almost two years ago now that JoLynne and I sat in a doctors office at Mayo clinic.  This was a very intelligent man.  He looked at my scans and told me that my time in this life was over.  He told me that nothing could be done for me.  He estimated that I had three weeks to live.  I left that awful appointment with my sweetheart.  We were so distraught.  I remember thinking. "A renowned doctor is telling me that I need to prepare to die and righteous priesthood holders have told me in blessings that I will be healed.  They can't both be right.  I need to decide who to believe."  At that time I chose to believe in priesthood blessings.  Two years later, here I am.  God was right, the doctor was wrong.  I am still choosing to believe in priesthood blessings.

A poem

Well. Here we are still doing the Houston hangout. I am feeling better mostly. All the symptoms associated with inflammation are still very prominent.  Mostly it's the headaches that drive me crazy. Both the doctor and I both feel that the tumor that had invaded the lining of my brain is probably swelling just like my sinus and my eye and that is leading to the headaches. I guess it is all supposition at this point but we are hopeful. If those tumors are swelling due to the attack  by the T cells then I'm all in favor.

Night time is the worst. The headaches are pretty bad. It makes it hard to sleep so I exercise. Last night at 1:00 am  I was going up and down the stairs to  the six story parking garage. When my legs start to hurt bad enough I forget my head. It was actually quite nice out. Very peaceful and it was a lovely view of the city from the sixth floor

We met with the doctor today again. He is such a kind man. The nurses are amazing as well. We are surrounded with the nicest people. We talked about my symptoms. He seems very encouraged by all the signs thus far.

Here is a Poem that I wrote while JoLynne was getting ready to leave for our appointment

Upon the Rock of Christ, my Lord

I've built my humble little home

It's plain and simple to the eye

But here it stands amidst the storm

The rains have come, the winds have roared

The very earth, it seemed to tear

I must confess, some damage done

But on the whole it still stood there

At first I thought, "How well I built. 

Behold the house made by my hand"

And then the truth, it softly speaks,

"Because of Him, your house still stands"

Oh God, forgive me, I am young

How quickly I would seek to claim

The credit for thy miracle done

I always knew from whence it came.

And as I live my knowledge grows

And finally I can understand

Thou art my God, who saves my soul

Not house, but Rock where on it stands

Independence day.

So, JoLynne and I are back in Houston.  Today I finished my fifth day of chemotherapy and was discharged from the hospital.  The objective was to deplete my immune system so that tomorrow, when they implant the new genetically enhanced immune system, there will be room for them to grow.  Chemotherapy is not fun.  It makes me tired and nauseated and this time it has given me a lot of headaches.  But, if it accomplishes what they want then I am glad to suffer in order to gain the final desired result.

Tomorrow is a big day.  The actual infusion really only takes a short time.  From last time I remember that the injected cells had a golden color to them.  Oh and they smell like some weird fruit.  This dose will be much higher than what I was given last time.  In January when they did this they were still trying to determine how much could be safely given.  I was only the second patient so the dose I was given was very small.  The result of that and other experiments has shown that the maximum dose had no safety concerns.  So, this time I start at maximum dose.  I like that.  In addition, assuming that my tumor shrinks or even doesn't grow, they will give me another high dose every six weeks for six more times.  I like that too.  Last time when I was in this study my blood supply to the right side of my face was seriously damaged.  Many of the major blood vessels had been destroyed by radiation.  That makes it harder for the T cells to get where they are supposed to go.  Part of my reconstruction in Miami involved rebuilding the blood supply to my face.  Lots of fancy plumbing work.  I think that should also work in my favor.  But, mostly we are relying on the hand of God to direct the affairs of my health.  Only He knows ultimately what the outcome will be and when I am cured, I will gladly give the credit to Him.  He is in charge and for that I am eternally grateful.  We are ready to celebrate "Independence from cancer" day.

Packets of Spiritual Sunlight

I am long overdue to post something here.  I don't know everyone that reads or follows this blog but I do know many of you.  I am sorry that I have been slow in keeping you updated.  Your prayers and faith in my behalf have been a great gift to me.  I love and appreciate you.

Well, we fly out for Houston on Monday.  Treatment will begin Tuesday and we will need to remain in the Houston area for about 3 weeks while they make sure that I don't have any adverse reactions to the treatment.  We hate to be away from our children again but it is necessary.

For the longest time there was still a shadow of uncertainty about if they would allow us into the study or not.  They seemed more inclined to allow us but wouldn't give us a solid answer.  Finally I just had to pipe up and tell them.  "Look, we don't want to whine, but we need some guidance here.  Please let us know if we are going to be in the study or not."   The lead investigator emailed back and said that he really needed to talk through the situation on the phone with me.  We finally got together on Father's day and had a good talk.

It seems I am only the second person that this treatment has been attempted on.   The first was a child and I am the first adult.  They had expected that our insurance would pick up the bill for the chemotherapy and hospital stay that are involved in the study but our insurance was unwilling.  The insurance saw that it was an "Investigational study" and said that our contract specifically permits them to deny payment for such treatments.  The principle investigator, Dr Stephen Gottschalk, said that fighting with insurance companies was something he wasn't used to doing.  His emphasis has always been on research.  He had filed an appeal but didn't know how it would result.  He was very concerned that we would end up having to pay something to be in the study.  I told him that money wasn't our primary concern.  Our concern is to find a cure.  Then he told me "It might be even $3000 or more."  I almost started to laugh.  All this drama over that much money?  I think that he has no idea how much money we have already spent in this fight.   I told him that God had been very good to me in my profession and that we would have no problem finding the money to pay whatever was needed.  He then said, "Then in that case lets get going.  I will have the business office call you tomorrow to set up the start date."  He said he had reviewed my health status and felt that there was nothing there to prevent my participation.  What a lovely father's day present that was.  We have spent a lot of time fretting and worrying about what we would do if we were not allowed to continue in the study.

This has been a rocky road to travel.  It hasn't been easy but at the same time I pondered about what has happened to me and my family these last four years as we have faced these problems together and learned to lean upon the Lord for our support.  I can honestly say that these last four years have been transformative for me personally and for my family.  I am a better person because of what I have been through.  My family is a better family.  Even JoLynne and I, who have always had the sweetest relationship, have grown so much closer because of this.  We walk every day.  I wish you could listen in on our talks during those late night walks.  Wow, we have some amazing discussions as we talk about how God is hearing and answering our prayers and how he is using the priesthood to bless and preserve me.  Cancer is awful, but God somehow makes good things come out of bad ones.

We are still waiting for God to show us the great miracle that He has prepared.  I still need to be cured.  I know that I should be nervous.  The cancer has progressed enough now that there is no time for us to make a mistake in our choices.  We are poised at the brink of a great miracle or, frankly a certain death.  I should be terrified but I'm not at all.  There is a peace that has settled over both JoLynne and I.  Somehow fear has vanished.  It feels like God is illuminating the path before us with small beacons of light that seem to repel our fears.  Richard G. Scott, one of the few apostles that I ever met in my life and had a chance to spend time with said it this way.

"The Lord didn’t just deliver the faithful from their trials right away. Rather, He visited them with the assurance that He would deliver them in His own time. These assurances, to borrow the words of ElderRichard G. Scott of the Quorum of the Twelve Apostles, are like “packets of spiritual sunlight” that Heavenly Father places in our path “to brighten [our] way.”¹Sometimes that assurance is all we need to persevere through trials, knowing that there will be an ultimate deliverance."

We know that there are challenges yet ahead but we also know that with God's help we can meet them bravely and that all will be as it is supposed to be.  What a great gift to know, beyond faith, that God is there.  He is my loving Heavenly Father.  He hears my prayers and cares about me personally. When I am afraid, He takes my hand. When I hurt, He feels my pain and helps me to bear it.  I am in awe that the greatest being in the universe cares about me.  I think that in the big picture I am not much at all but somehow God thinks I am worth His time.

Poco a poco se anda lejos

Well, starting with my title.  One of my favorite sayings that I often heard on my mission in Bolivia.    Translated it means, "Little by little one can walk a long ways."   I feel like I have walked a long way.  Hopefully this cancer journey is nearing it's completion soon with a happy ending.

Yesterday was another doctors visit for me.  They took out all of my stitches and the staples in my head.  The incision on my scalp went all the way from my right ear  almost to my left ear.  Honestly, I don't even want to know what they had peeled off while I was sleeping.

It feels good to have the staples gone.  They were annoying.  They are still nervous about my leg.  It was such a wide incision.  I know that the flap on my face is over 3 inches wide in one place.  That means that the incision on my leg had to be that wide.  That's kind of freaky too.  They covered my leg with a ton of steri-strips after the stitches came out and told me to be careful about walking too much.  They don't want it to open and neither do I.

We talked with Dr. Marx for a few minutes.  He is the nicest guy.  He is quite famous among oral surgeons but you would never know it by talking to him.  He is just really down to earth and unpretentious.  He got us a copy of the pathology report done by University of Miami.  We still haven't seen the report from Baylor.  Anyway, the report goes site by site sampled.  Many of them had no cancer.  Of those that did have cancer most showed 50-60% of the cancer cells were dead.  That is good.  Both Dr. Marx and the microvascular surgeon, Dr. Tunsin, encouraged us to get back to Houston soon and have more T-cell therapy.  In their words, "We have given you a beautiful blood supply to that area to help the T-cells get access and we have removed nearly all the cancer.  Now if ever is the time to hit it."  I think that they feel that we need to act before the tumor has a chance to re-grow.  Needless to say, we feel the same way.

In the meantime, every day is a gift.  I am grateful for every one.

iRobot

Today I had my 12 week MRI scan.  Now we are just waiting for results.  I really hate scans.  They are really hard on me emotionally....Arghh.

The stress they cause builds up for days.  A few nights ago I went to bed worried about all that.  Sometime in the night I had a dream that my scan had come back and the doctor came in and told me that the scan showed the cancer was all through my brain.  I was so unhappy.  Then the doctor said, "Don't worry, we did a study and it looks like you don't use your brain that much anyway so we are going to just take it out and turn you into a robot.  Don't worry, we do this kind of thing all the time"

Everything happened so fast then and the next thing I knew I was waking up from surgery and I was a robot.  The doctor handed a remote control to my wife with big buttons that said "Eat, talk, walk etc" Somehow I was supposed to be happy about the situation.  I guess since I didn't have a brain any more it probably didn't matter.  I woke up pretty unhappy though.  I hope it was just a dream.

Tick Tock Tick, Tock.....

Well, I am two weeks closer to my surgery.  Only 5 weeks left to wait.  The surgeon tells me that as soon as I wake up I will be able to open my mouth to a semi normal width....  I can almost remember what that is like.  Right now I can open my mouth just barely larger than my little finger.  The surgeon tells me that we will need stay in Miami for about a month after the surgery to make sure that there aren't complications.  I can think of worse places to have to stay.  Miami should be lovely.  JoLynne has a knack for finding nice places to stay.  She searches all these varied websites where people are renting their houses.  The house she found in Miami is truly beautiful.  Very nice,  looking out over a lake.  It will be nice to have a nice place to recover in.

We have loved having our sweet son Peter home from his mission.  He has a glow about him.  He still stomps me at ping pong but he is so nice about it.  Every time he destroys me in a ping pong game he comes around the table, hugs me and tells me he loves me.

In general my health is greatly improved.  It's so nice to have some energy back again.  I still deal with pain but at least I have some energy.  This weekend I planted my garden, scrubbed my fish pond and moved all the rabbit droppings into my garden.  I kind of wonder why things grown in animal pooh taste so good.  Maybe it's best not to think about that.

FaceTime

Well, we finally have a surgical date to reconstruct my face.  It will be April 17th in Miami.  We had hoped it would be earlier but it turned out to be complicated to schedule the operating room and all the surgeons at the same time.  So, April 17th it is.

I am really doing pretty well these days.  I even have hair.  JoLynne told me the other day my hair was pretty so I guess I was having a good hair day.  That's a nice change from a no hair days which is what I usually have.  So far it is straight and maybe a little more gray.  I think I earned it.

Most of my struggles these days are with pain.  Most of the pain is in the lower area of my jaw where all the tissue is dying.  We sincerely hope that when they cut that all out my pain will begin to improve.

I have been trying really hard to gain weight.  They need to take skin from somewhere and it seems my tummy is the most promising spot.  The micro vascular surgeon left me with a strong injunction to "Gain weight"  He wants me to stretch out that tummy so that he has more skin to work with.  I have never really paid much attention to what I eat but now I am being forced to.  I'm trying really hard to get 4000 calories a day.  It's harder than you might think, especially when it is hard to chew and swallow.  We have found that Costco vanilla ice cream has 650 calories per cup.  I can melt that and pour it in my tube.  Sometimes when I really come up short I just dump straight olive oil in my tube.  That has a ton of calories and it keeps you so regular.  When this is all done I may write a diet book "The olive oil diet miracle."  Who knows, it might be a best seller.

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.

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.

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.

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".

Go to work little t cells

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

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.

Never pray for empathy

I don't want to sound proud but I will just say that I have always taken pretty good care of my teeth.  It kind of goes along with my profession.  In the last 30 years I have had only one cavity.  I always try to be empathetic to my patients when they suffer with dental problems.  I really do care.  But to be honest I haven't had a lot of tooth problems myself so my caring about their problems doesn't come from personal experience but rather just because I love my patients.  Well, I guess that is changing.  This dumb cancer is bringing me more experiences.

My mouth is suffering the after effects of massive radiation exposure.  They told me that after 33 rounds of head and neck radiation that I had here I had my "life time maximum".  Unfortunately, as things turned out, we had to have more radiation at Mayo to save my life.  The second time around was an quite a bit more radiation than what I had received during the 33 rounds.  So, now I am like three times my life time maximum. I pretty much glow in the dark.

 I have been having more pain so my sweet wife suggested that maybe I had tooth problems.  I hadn't even thought of that since I don't ever really have tooth problems.  Knowing that she is almost always inspired I went to my office and took some x-rays.  Sure enough, my two bottom right molars had abscesses and I probably have three abscesses on the top right.  No cavities, just dead teeth.  I think that they just gave up and died from so much radiation.  Much of the bone around the teeth is also gone.  All I can say is "Darn it all!"  Honestly I would swear if I thought it would help.

I called my dear friend, Daniel Burr.  He is an endodontist and he was so kind to get me right in at his office.  The question is, how do you do a root canal treatment when you can only get your mouth open 1/2 inch?  Well, I don't know how Daniel did it, he is a magician, but he got in there and cleaned the bottom two out and medicated them.  When we have some more time we will do the top ones.  For all my patients who have had root canal treatments in the past I guess I can now join your club.  One way or another, God is going to shape me into something better I guess.  Right now He is teaching me empathy.

Other than dental adventures and dealing with some pain I am doing okay.  We are still anxious for January to arrive.  I'm getting used to taking most of my nutrition through my stomach tube.  It's a relief to not have to get everything by mouth.  JoLynne is so kind and patient.  She is always concerned about me and trying to do whatever she can to make me comfortable and healthy.  The other night I was hurting and waiting for medications to kick in.  JoLynne sat there for probably 30 minutes rubbing my feet trying to take away my pain.  She is truly angelic.  I am blessed more than I can say.

My brother in law passed away just recently.  It was such an sudden thing.  During the few months that he was ill we prayed our hearts out for him.  I can't remember a time that I have ever prayed that hard for anything.  If prayers and tears alone could heal you he would have been healed many times over.  Only God knows the whole plan.  I don't pretend to.  It was hard to see him go.  My sister Marie is a strong, faithful woman.  She will be okay but it will be lonely for her until they are together again.  How grateful I am to know, without a shadow of doubt, that death is not the end.  I can't understand how people deal with this who lack that knowledge.  I know that I will see Randy again one day, I have no doubt.  I look forward to that day.

Another blog

Isn't language interesting.  Twenty years ago if I told someone that I was going to blog someone would have probably handed me a bucket to catch it in.  Now it means something completely different, or at least I hope so.  Hopefully what I write is more than verbal vomit.

This last Monday I had blood collected for the clinical trial in Texas.  I came into the doctors office holding this fairly large box full of empty vials and handed it to one of my sweet nurses.  She took one look and said, "Wow, that is a lot of blood."  About two thirds of the way through she couldn't get any more to come.  I wondered if I had run out but she managed to pull a little more and finish the job.  I'm still here blogging so I guess that something is still circulating in there.

Kids in Oregon after we abandoned them

Monday afternoon I had a "PEG tube" put into my stomach.  I have really been struggling to swallow. I just can't direct traffic in the back of my throat.  Sometimes the food goes down, sometimes it gets stuck, sometimes it comes out my nose, sometimes it goes into my lungs.  They think that is the reason I got pneumonia this last week.  Sometimes you just have to laugh.  A few days ago I had just eaten dinner and had run over to a friends to take them some tomatoes.  As I was getting out of the car I sneezed and out popped a carrot, not a small one.  I just looked at that and thought "Oh brother".  Anyway, with this tube directly into my stomach I can still keep nourished and not have carrots popping out of my nose.

It was an emotional day for me.  I remember looking at that box as we sent it off to Texas via FedEx thinking, "Okay God, now you have my blood, turn it into a miracle."  It seemed so final.  Then getting the PEG tube seemed like another admission to my declining health.  Arghh, I hate that.  I just kept repeating in my mind, "prepare for a miracle Eric"  We are full of hope and we trust God.  Sometimes I just think "I believe, help thou my unbelief."  It's hard to have perfect faith all of the time.

My angel wife and our granddaughter

I talked to the lead scientist today from Baylor.  She is very nice.  It sounds like treatment will probably begin January 5th.  It will take that long to engineer the cells.   Probably we will need to stay in Texas for about 6 weeks.  This is a phase one trial meaning they are testing safe doses.  She told me that it appears that the initial dose that they had thought to start with appears safe so she is going to jump me up to the next dosing group right from the start.  That is good news to me.  She also said that my blood shows that I am positive for another marker, HER2.  That is also good news.  If the GD2 doesn't work they can try the HER2 instead.  She believes a trial against osteosarcoma using HER2 will begin within a few months.

In the meantime, I haven't had chemotherapy for almost three weeks now and boy do I feel good.  I just love how I feel when I'm not being poisoned.  Chemo will begin again on Friday so I will try to enjoy feeling human again even if it is only for a few days.

If joy had a face, this would be it.

This last week we had most of our children with us.  Seth had flown out to go to his cousins ring ceremony.  Shanelle, Mike and Vivian came to bring our car back from Oregon.  That was a clever way of us to get them to come.  Sunday we took up the entire row with our family.  That made me happy.  It was like the good old days.  They have all gone home now but it was nice while it lasted.

I love my profession

Someone once said, "Choose a job that you love and you will never work a day of your life".  I like that saying.  Now I know that every job has it's moments, mine does, but truly I love what I do.  I have thought about what I love so much and decided that the main thing for me are the wonderful people that I treat as patients.  They feel more like friends to me, not just patients.  It has always felt that way to me but even more so since my health challenges.  When I was first diagnosed the first people we told were our children, then our siblings and parents.  Then we had to make a choice, would we let others know or try to keep it to ourselves.  We made the decision to tell others, my patients and members of my church.  One reason was selfish, I knew that some would pray in my behalf and I wanted to wear our God's ears with petitions.  But the second was that most of these people felt like family to me.  How could I not tell them?  I knew that I would loose some patients who would go looking for a "healthier dentist" but I chose to tell anyway.

For these last three years I have been so grateful for the kindness these people have shown me and the prayers they have offered for me.  I knew how much I loved my patients and church members, I now know better how much they love me in return.  From time to time I have doctors that wanted me to see a mental therapist or join a support group to help me deal with my cancer.  I simply tell them that my therapists and my support group are my family and my friends, many of which are in my practice and my ward and stake.

Okay, having said all that let me tell you something that lifted my heart the other day.  I have a patient and dear friend who I have treated for many years.  She comes from the most wonderful family.  I love all of them.  This particular patient was diagnosed with a rare type of cancer about 17 years ago and told it was incurable.  They estimated she had 18 months.  She underwent treatment anyway even though she new it wouldn't cure it.  Part of her cancer was in the back side of her throat and I could see it.  I took careful photos of it every time she came and would share those with her physicians for their records. I can usually get way better images than they can.  As the years went on we could see it growing but there was little we could do.  These last three years my heart has come to understand her's even better with my own health challenges.  This last week she came in.  She told me that about 6 months ago they had surgically removed some of tumor so that she could swallow better but fully expected it to grow back.  Then in November a new drug was discovered for her cancer. She started taking it within days of it's approval.  Last time I saw her she had a huge tumor in the back right of her throat and another pretty big one in the left side of her throat.  Now when I look, the right side had nothing and the left side had shrunk to almost nothing..  She said "God just needed to keep me alive until a cure could be discovered"  I can't describe how those words came home to me.  It perfectly describes how I feel and what I hope for.

The other day I was visiting with a reconstructive surgeon.  At some point, when my cancer is cured, I am going to have to reconstruct the right side of my face.  The surgeon was very nice and said that what I needed was complex but possible.  He then told me, "You know, you may not survive this cancer right?"  Well, I know know as well as anyone what medicine can do for my cancer right now.  I have read hundreds and hundreds of clinical studies related to my cancer and they all start out with "Since there is no known treatment for recurrent osteosarcoma..." then they proceed to talk about why their experiment might further our knowledge about this untreatable disease.  I looked at this surgeon and said.  "You know, I am barely old enough to rememberer Polio.  It used to be mostly incurable.  Then God chose to reveal a cure.  How many polio patients have you seen this week?"  He got a big smile and said, "None... I like the way you think"

So, life is good.  I have had a wonderful year with two sons getting married, another son leaving on a mission, and hundreds of things that have brought be great joy.  I appreciate every single day.  The hard days just make me appreciate the good ones more.  I love walking, holding my wife's hand and I am looking forward to years and years of that to come.

A time for inspired decisions

If this were a serial novel I think I would have lost my audience by now.  I would do more regular updates but I want to wait long enough that I have something of importance to say.  I guess that time has come.

I have just completed my third round of chemotherapy.  My energy level is up and down.  For that matter so am I.  I fainted again yesterday while walking to the kitchen.  Such an unusual feeling.  When I woke up, I was so disoriented.  I was laying on the floor of the living room, sprawled out and my first thought was "This is a really unusual place for me to take a nap"  Then I notice a few tender spots on my back and knee and couldn't quite figure that out then it finally dawned on me what had happened.  It's just weird.  I'm glad I didn't hit anything too hard.  I struggle to keep my blood pressure up.  JoLynne now has me wearing compression socks.  No more showing off those sexy legs of mine.  I have increase my salt intake which was already high.  I guess I will just start sprinkling water softener salt on all my food.  And, I am drinking more water.  I was already drinking about 8-9 glasses a day.  Now I slosh when I walk and I think I will invest in a second bladder so that I can stay in bed all night.

Thursday I had a follow-up scan to see what effect the chemotherapy has been.  Honestly I was expecting the worst.  When I first started chemo I saw immediate improvement but then some of the symptoms began to come back.  Trouble swallowing, speech impairment, the sore in the back of my mouth returning slightly.  Never to the point I was at in Boston but not perfect.  We picked up the results on Friday and they showed that the tumor was almost identical in size as compared to the beginning go of chemo.  We would have loved to have it reduced but, considering it's astronomical growth rate when I started I am truly grateful to have it not grow any bigger.  I will gladly accept that.  We meet with the doctor on Tuesday to decide what to do with that information.

family at the airport

About two weeks ago I was released from my calling in the Stake Presidency.  This has been a wonderful calling for me so there is some sadness when it comes to an end as expected with any calling that you love.  I have loved serving with President Roberts and Larry Myler.  They will always be dear to me.  I have loved the members of the stake, especially the youth.  They inspire me. I have loved helping people go to the temple of God and receive the blessings that can only be had there.  I have loved having inspiration in preparing my talks and lessons.  I feel like God made me something better than I am while  I served.

All that being said, when the president told me that I was to be released I felt a sweet confirmation that it was God's will and that brought me peace.  The president said that he felt that in his prayers that I would likely have to travel to find the final cure for my cancer.  I believe that statement was also inspired.

We hoped that chemo would be the final answer but always I thought that the cure would be found elsewhere.  With that in mind I and my wife and my children have spent a ton of hours combing over the internet looking at clinical trials that are applicable to my disease.  I have personally looked at over 400.  They don't speak english in their descriptions, so, even with my health care background, I often have to look up a lot of words.  Almost all of the trials are phase I, which means that the research is just beginning on a particular treatment.  A year ago most of these trials were not available yet.  We believe that God has preserved my life to this point so that an answer would be available.   I have now honed it down to about 9 trials that I think are promising.  Only God knows which of these will prove to be successful, but He knows!  I am doing all in my power to study them out and I have faith that God will show us the way that we are to go.  I had a sweet blessing from my former Stake President today and among other things he told me that God would reveal to us the path we were to travel.

Spencer and his mom

The other big event of this week has been the departure of our son Spencer on his Mission.  We saw him off at the airport early Wednesday morning.  He is such a good boy and we miss him already.  We are grateful that he has chosen to serve a mission though.  His life will be forever altered for the better.  He will be in training for 6 weeks in Mexico city then he will fly off to northern Chile.  I can only imagine the adventures and sweet spiritual experiences that await him.  In the meantime, it's mighty quiet here at home.