More infuaiona

Yesterday was infusion #3 of optima  Our visit with Dr. Wallentme was good.  These infusions make me tired.  The headaches are very real.  JoLynne tries to keep ahead of them.  No small task   The headaches are very persistent  It is interesting this time i had a bump come up in the middle of my mouth.  I'm sure its is tumor pushing  It is annoying but I have seen the bump reduce in size by 10-20 % right after the infusion so in ways it is a blessing to know that something is working because I can feel lt shrinking  We continue to be very hopeful that optivo will somehow shrink this cancer down.  I have told Heavenly Father that I really need a miracle to shrink this tumor  This is something that I cannot do on my own.  I need His help  I know that He loves me.  I just hope that this time He is willing to heal me.

I am so grateful for JoLynne.  She is so kind and caring.  I really love her and I am grateful to her too.  She is such a good woman.  I am so blessed to have her

a great phone call

As I think I mentioned, we have begun a new drug called PD1.  Our insurance denied payment because it is currently only approved for melanoma.   The testing for Osteosarcoma began this week but it will be months before that data is available.  We don't have that long to wait so we decided to pay it on our own.  Our doctor submitted a request to the drug company asking if they could give me some kind of better price since I was paying myself and insurance wasn't helping.  The drug company turned down our  request.  We were just planning on paying $8000 every other week and somehow finding the money.  It would have added up.  I think that treatment would have consisted of at least 6 injections at $8000 each.  It might have even been more.

So, today, I came home and was just sitting down for lunch when a phone call came in asking for me by name.  The lady on the phone said she was calling from Brystyl Meyers.    She said "We have decided as a company to provide all of your drug at no cost to you.  It will be shipped directly to your doctor"

Well that started me crying.  She asked if I was okay  I told I was just so grateful.  " i have been through so much.  What you are doing means so much to me"  She just said "We re glad we can help you"  Every time I turn round I see another miracle from God

another step in our journey.

So yesterday we began another step on our journey fighting this cancer.

For many reasons, we need to shrink the size of this tumor.  For one, it's not good having it press upon my brain so much.  Also, for us to continue in Houston, the tumor needs to be reduced in size.

My doctors in Houston, Dr. Gottschalk and Dr. Wang, have been so kind to us.  They are such caring kind people.  I am grateful to both of them.  They are scientists, of course, but they are also really kind health care providers.  In such a challenging time in my life I am so grateful for their kindness to me.

In our discussion they had mentioned to me the possibility of maybe adding a drug called PD1 to my treatment.  It is interesting that, independently, this had also been suggested to me by my oncologist here, my brother-in-law, a super smart physician back east, and of course it is all of the sudden very much in the news since President Jimmy Carter is being given this drug.

PD1 is a drug that helps your body's immune system to find a cancer and attack it.  Many cancers have developed the ability to hide from our own immune system.  PD1 takes away the cancer's ability to hide.  This is a very new drug but is already showing great promise.

So yesterday I had my first dose.  We asked our insurance to pay but they said no.  The drug is not yet approved for osteosarcoma, only for melanoma.  There is a nationwide study beginning this week actually, testing the drug against osteosarcoma but the study isn't done yet.  Because the insurance denied payment we asked for mercy from the drug company.  In the past they have been willing to give the drug for free sometimes when insurance says no.  We haven't been able to get them to agree to that yet but we are still trying.  We felt strongly that this was the course that God wanted us to take so we told our doctor that we would just pay for it ourselves if it would hurry things along.  It isn't cheap, $8000 per dose but my children tell me that I am worth it.  JoLynne seems to think so too.  So, yesterday it began.

I seemed to have a very quick response.  I know that I have cancer in my right sinus and around my eye and brain of course.  Within an hour of the infusion I began having significant swelling in all of those areas.  The swelling around my brain gave be a really bad headache.  We came home from the doctor and I was so grateful to have all of my sons, minus Spencer, and my son in law, gather around me and give me a priesthood blessing.  Within 30 minutes of that blessing my pain was nearly gone.  I am so grateful for the power of God shared with men by means of the priesthood.  That power is very real to me.

As I was preparing to get the PD1 I was saying a prayer of course, asking God to please bless this treatment to be effective in fighting my cancer.  I had the most distinct impression come over my mind.  It basically said, "Eric, open your scriptures to the story of Moses and the red sea.  The words that you will find there are my answer to your prayer.  So I opened my scriptures to Genesis 14:13-14 and here is what it said.

 13 ¶And Moses said unto the people, Fear ye not, stand still, and see the salvation of the Lord, which he will shew to you to day: for the Egyptians whom ye have seen to day, ye shall see them again no more for ever.

 14 The Lord shall fight for you, and ye shall hold your peace.

What a sweet and wonderful answer this was for me at this time.  I am so grateful that God would direct me to those words.

Last night, when the pain had finally gone down, we were all sitting around in our living room.  All of our family.  We were talking about fun memories.  JoLynne and I have been blessed to  travel much in our lives together.  We have been all over the world doing humanitarian work but we have also traveled much, just the two of us, just for the joy of being together.  My head is just full of happy memories that we have together.  Last night I found myself thinking, "Eric, there is still room in your head for more happy memories and you are going to get better and make those memories together with your sweetheart JoLynne and others."  Not only was I thinking that, I found myself really believing it.  It was such a wonderful feeling of hope.  I was so grateful for how I felt.

So grateful for God's blessing to me.  I have been so so blessed.  I am so grateful.

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.

48 hours

Well the last 48 hours have been "interesting".  After five days of chemotherapy the stage was set. Monday morning they brought me in and pumped me full of fluids then brought in what we hope will be 25 ml of miracle. It was an unusual experience for me. As they prepared to inject the T cells I had a strange surreal feeling come over me. The room suddenly become much brighter. Time seemed like it slowed down or something. And I had a distinct impression that there were things going on in that room that were not readily apparent to my eyes.   Anyway the moment passed and everything went back to normal but it was strange in a good way.  They kept me around for another four hours to guard against severe reactions then they let us go home. Boy was I ever tired after that. I couldn't hardly keep my eyes open.

My right sinus has always been a little congested since my surgery. They tell me that it is partly due to the residual tumor in my right sphenoid sinus that they couldn't  remove. Dr Gottschalk had warned me before hand that any remaining tumor would likely swell when attacked by the T cells. Within six hours of the infusion my right sinus was completely blocked off. I can't move any air through that nostril no matter how hard I push.   It's annoying but not too bad. At least I can still breath through my left nostril.

As you know, I have also had visual problems with my right eye. I have issues with motor control and at times with visual clarity. When I woke up Tuesday morning and lifted my right eyelid I had lost all vision in my right eye. It was pitch black. That was a little spooky. This is probably also due to swelling. Within a few hours the image in my right eye began to come back. It is dim but it's there. Other than that I have just felt like I have a real whopper of a flu. aches, pains, throwing up, sleeping around the clock, no appetite.

So today we went back in and had some more fluid pumped in and I am actually feeling quite a bit better. Since I am only patient number two I don't think that they really know what to expect but the symptoms associated with swelling where we know that there is tumor seem encouraging to both Dr Gottschalk and to us. We are full of hope and prayers that this will finally be the way that God brings a miracle. We have been so grateful for your faith in our behalf as well. I know that sincere prayers are heard personally by our Heavenly Father. He loves his children. Of that I have no doubt.

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.

A few more bumps in the road...

Well, I haven't posted an update here for some time.  Frankly, there have been some issues that we couldn't tell how they would resolve so I have held off,
hoping that I would do an update when the path became a little more clear.

I think I have mentioned before that starting about 4 days post surgery I started having trouble with my right eye.  I was losing motor control.  About 10 days post surgery the vision clarity in that eye began to decline.  Both control and clarity continued to get worse every day for the next few weeks.  When we came back to Utah I went to my ophthalmologist.  He wasn't really sure how to explain my problems.  My brother in law, Troy, helped me to get into see a nuero-opthamologist in Salt Lake.  We had an extensive visit there and they had me get a new MRI.  After going over everything it was the doctors opinion that the problems were caused by tumor growing behind my eye pressing on the optic nerve and the nerves that control the muscles.  When I communicated with my doctors in Houston they became concerned by where the tumor was located and said that I might not qualify to be in their study anymore because swelling in the tumor when treated may cause significant problems.  Wow, that was a bad day!  We felt like we had been spiritually guided to Houston to be in this study and now I was being disqualified.  Honestly we didn't know where to turn.  So, as we usually do, we went to the temple.  Both JoLynne and I had distinct impressions that God was in charge and that it would be okay.  I remember standing in the shower and saying my prayers, (I know, weird) but I was praying that God would give us direction so we would know what to do and where to go.  I had a distinct impression, "Eric, when you come to fork in the road, you will have the guidance you need.  You are not at a fork in the road."  Still, being all too human we worried.

A few days later my vision suddenly began to clear.  My motor control was still impaired but I could see again.  In a matter of about 3 days my vision returned almost completely.  Prior to that I was essentially blind in the right eye.  I could tell black from white and that was about it.  I called my brother in law Troy (neuro-opthamologist in Maryland).  He thought that there might be more going on than what was thought, maybe an infection.  Tumors just don't grow backwards without intervention.  I told the doctors in Houston about the changes.  They didn't want to commit either way without talking to the neuro-opthamogist.  Last Sunday, my whole family held a fast for me.  We are so grateful for their faith.  Monday morning my phone rang.  It was the doctor from Houston, Dr. Wang.  She said that they had been talking all week about my case and they finally came to the conclusion that there was no way that all my problems could have come only from tumor since the problem was reversing.  In their words "We have decided that you should be back in the study if you still want to be.  Can you start treatment on June 23rd?"  Wow there were tears of joy at our house when I hung up from that phone call.

We fly out to Houston this Monday for a new MRI and to meet with their neuro-opthamolgist.   He just happens to be a close friend of Troy's, who was instrumental in helping us get an appointment again.  Assuming that everything is okay with him and the new image we will begin treatment again in Houston on June 23rd.

Red rover, red rover, send Eric back over

It has been wonderful to be home.  I forgot how nice our own bed is.

We talked with the doctors from Houston yesterday.  They have been talking with the immunotherapy board about what the next best step would be.  My tumor has at least two unique markers on the tumor cells.  One marker is called GD2 and the other is called HER2.  Our first time in Houston they designed cells to target the GD2 marker.  After reviewing the pathology reports they have decided that they would like to put in new cells aimed at the HER2 marker and see what that does.  The GD2 seemed to have killed about half of the tumor but the tumor could have died for other reasons.  We aren't sure.  The HER2 will be very similar to the GD2 except that they are going to give me 5 days of chemotherapy before injecting it.  The theory is that if you clear our some of your own T-cells that there will be more room for the injected, enhanced T-cells to expand and take over.  This will be the sixth time I have gone through chemotherapy.  Ughh...   We will probably have to be back in Houston in about 2 weeks.

We knew that this might be an option so when I was in Houston last time I had them take blood and prepare the genetically modified cells targeting HER2 just in case.  So, the cells have all been engineered and are sitting in cold storage waiting to be injected.  Oh, another important difference in this study is that they will keep injecting more T-cells every 6-12 weeks as long as the tumor is responding.  I really like that idea.  T-cells, even genetically enhanced ones, don't live that long.  I love the idea of sending in fresh troops over and over until the job is done.

This same doctor did this same study a year ago without the chemotherapy.  You should understand that to qualify for these studies you have to have exhausted all conventional treatments.  In other words, there is no known cure.  The last time he did this study 50% of the patients were still doing well at the end of a year.  That doesn't seem that great but when you consider who they are working with it is really very promising results.

So, last night JoLynne and I went for a walk around the block talking through all this stuff.  It's a "hard pill to swallow", so to speak.  Knowing what chemo is like doesn't make it easier I'm afraid.  Anyway, we came home and were laying in bed.  I was cold and had a blanket.  JoLynne said, "What do you think Eric?"  I told her that I had a very distinct burning in my bosom  Then I pulled back the blanket and showed her the electric hot pad on my chest.

I'm leaving on a jet plane

leaving on a jet plane

Tomorrow we will finally be headed back to Utah.   It feels like we have been gone so long.  Both JoLynne and I will be so grateful to be home.  We don't know how long we will be there.  That should be known in the next few days.  The immunotherapy team in Houston is reviewing the pathology done here in Miami and comparing what they did in Houston to try and decide our next step.  The surgeons here are adamant that we proceed towards treatment as soon as possible so my guess is that our stay in Utah won't be near as long as we would like.

Yesterday I had my weekly doctors visit.  They wanted to see a post surgical CT scan of the area so we went over to radiology.  The nurse was a funny lady, kind of a little off.  As she was taking me back JoLynne whispered to me, "Speak up if she messes up."  Anyway, on the way back she commented on how white the skin was on the side of my face.  I told her is was a graft.  She said, "Where did they get such white skin?  Was it from your butt?"  That still makes me laugh thinking about it.  I told her it was from my leg. I had to show her the scar to prove it.

The other guy

One week from today I will have my reconstruction.  For the record, I plan on sleeping through the whole event.

Yesterday we went to the temple  As we entered the locker this sweet temple worker looked at my bandage and said, "What did the other guy look like?"  Usually I can never think of clever things to say on the spot but I guess inspiration comes more easily in the temple.  I told him "The other guy was a surgeon.  Watch out for them.  They knock you out and then they beat you up"  We both had a good laugh.

Honestly I will be so grateful to have this rebuilt.  Talking to the surgeon and my infectious disease doctor here they are a little concerned about a psuedomonas infection that I have on the old, broken titanium chain.  This type of bacteria adheres to metal and is very hard to get rid of while metal is present.  So, they may do the surgery in stages.  First remove the metal and all the dead and damaged tissue and repair the holes and then wait a few months for the psuedomonuas to resolve before rebuilding the jaw.  We will know more on Wednesday when we talk to Dr. Marx.  I plan on telling him, "Look, I plan on living to an ripe old age, so start with that as a given.  Then treat me the same way you would if I was your brother."

I was honored at the UDA (Utah dental association) meeting this morning.   Inducted into the international college of dentists actually.  Normally this has to be done at a national ADA meeting but they made an exception for me due to my health.  They tell me that this is the first time that they have ever allowed an exception.  It was very nice to be there with my sweetheart JoLynne by my side.  Some of the finest dentists that I know belong to this group.  I was grateful to be invited.

Face lift and tummy tuck coming up

Tuesday was a very good day.

I had my scan on Friday.  Usually we can go and get the results right away, usually within 3 hours but somehow there was a hangup.  They kept having problems.  So the days went by and still no results.  I was beginning to imagine things like, "Maybe it's bad news so they don't want to tell me."  Finally I just decided that I didn't care what they told me, I know what I believe that God has told me so that information trumps all doctors.

Finally we had a appointment with our doctor on Tuesday.  We went in and he said, "I'm sure you have already read your report."  We usually do.  This time we told him that we didn't know anything about it.  He smiled and started to read.  "No change in tumor size since February scan"  JoLynne and I went out in the hall and cried.  JoLynne said she felt like going dancing.  I couldn't think of anywhere to dance at 11:00 am.  Our daughter suggested the senior citizen center.  We didn't take her up on that.

No growth is great news.  Because I have a hard tissue tumor it won't shrink for a long time, even if it is dead.  The fact that it isn't growing is awesome.  The only time in the last three years that I have had the tumor growth stop for any length of time was when they hit me with that massive radiation that I am still suffering from.  That stopped it for a year.  Frankly in that area it is still stopped.  Everything there is stopped dead...literally.  Healthy tissue and cancer alike all dead.

So now the path is clear for reconstruction...Yeah.  In about a week and a half we leave for Miami.  April 17th will be the surgery.  We arrive a few days early to do preliminary work.  JoLynne has rented a house that will be very nice to recover in.  I will be a week in the hospital and then will need to remain in the area for a month in case there are complications.

I'm pretty excited to have a complete face again.  They will be using skin from my tummy, literally they are calling it a tummy tuck.  They asked me to gain weight and I have really tried.  It hasn't been easy.  A dear friend and neighbor clued me into some stuff that body builders use.  1900 calories per serving.  WooHoo...That has helped a little.  I am now eating about 4500 calories a day and my weight is inching up 1/2 a pound a week.

I have been so blessed.  I know that the prayers of so many have made a difference in my life.  Thank you.  I love and appreciate you.

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.

The waiting game

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

Genetic engineering and automobiles

Car with genetic engineering

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

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

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

Bring on the big guns

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

JoLynne' fancy flowers

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

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

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

Me with this gorgeous babe I picked on the beach

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

She even has cute feet

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

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

You know it's nice when you have garbage just for coconuts

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

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

Pretty nice for January

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

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

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

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

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

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

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

Little Havana

My version of dominoes

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

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".