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

Deadly donuts

So we had a bit of excitement around here last week.  I guess you should first know that I live with pain.  It is part of my life these days.  Usually I wake up at least once a night to take pain medication sometimes I wake up more.  Anyway, Friday I woke up at about 4:00 am hurting and quietly got out of bed and went to the kitchen and prepared my pain medication.  Usually I dissolve it in water and then pour it in the tube that I have so that it goes directly into my stomach.  So, while I was waiting for it to dissolve I noticed that there were some Krispy cream donuts on the counter.  It always makes JoLynne happy when I find ways to get more calories.   I love making her happy so I thought, "I will eat a donut while I wait.  It has to have a few calories.'"  So, I warmed it up for a few seconds in the microwave and sat down to the task.  I took a fairly normal size bite, chewed a bit and swallowed.  Because of the radiation my ability to swallow is impaired.  Breads are usually harder for me than most things.  Anyway, the donut didn't go down.  Instead it got stuck right on top of my wind pipe.  I couldn't breath or talk.  Having things stuck isn't uncommon and usually I can run to the sink and cough them out.  So I ran to the sink and did all the normal things I do when that happens but nothing was working.  I had a complete airway blockage.  I struggled at the sink for maybe 2.5 minutes but with no success.  Now I was beginning to panic.  I still couldn't breath that whole time.  It was 4:00 am and I was the only one awake.  I ran down the hall and opened our bedroom door and turned on the light.  I couldn't talk so I was just holding my hand on my throat hoping that JoLynne would get the message.  She looked at me and asked what was wrong.  Obviously I couldn't answer her.  I just kept grabbing at my throat.  Now JoLynne got excited and yelled for our son Jarom who was asleep in the room straight across from ours.  You see, we own apartments and recently we had an upstairs tenant whose toilet flooded really bad.  It did extensive damage to his apartment and even more damage to the apartment below him which is where Jarom and Natalie live.  The repairs have been slow coming so Jarom and Natalie are living with us while their apartment is being repaired.  Jarom, Natalie and our sweet daughter Elizabeth all came running into the hall.  By now it has been probably 3.5 minutes without air.  Jarom says, "I think he is choking".  He grabs me around the chest and gives a pull.  His hands are too high to move my diaphragm so it doesn't work.  Now I am probably at 4.5 minutes without air.  The room is beginning to spin and go dark.  Sweet Elizabeth, who is just home from girls camp where she learned first aid, tells Jarom, "You need to put your hands lower and pull up."  (By the way, thank you girls camp leaders for teaching my daughter this.  I am very grateful to you whoever you are)  Anyway, Jarom repositioned his hands and pulls again.  Now it has been probably 5 minutes and out pops this piece of donut about the size of a ping pong ball.  Wow, did it ever feel good to breath.  This whole thing really scared me.  I grabbed Jarom and Elizabeth and thanked them for saving my life.  I took this piece of donut that I had caught and went to the kitchen. I guess I know that donuts are not sentient beings but I was so angry.  I threw it in the sink and ran it down the disposal.  You should know that I never swear.  I really never have.  But that night I called out "You damn donut!  Go to hell!  How dare you try to take my life after all that I have been through"  Well, the donut went in the sewer and I guess that was close enough.  After everyone settled down a bit  I climbed back in bed with JoLynne.  We were both really unsettles.  JoLynne declared "Don't ever do that again.  You scared the bajeebies out of me"  Frankly I didn't even know that she had bajeebies but I guess I am glad that they are gone.  Honestly I'm not really sure what a bajeebie is.  Anyway, as we lay there suddenly we heard sirens close by.  I don't know where they were going but I am so grateful that our house was not their destination.  It easily could have been if it weren't for Jarom and Elizabeth.

So, we have a new rule at our house.  Eric is no longer ever allowed to eat anything by mouth when he is alone.  Probably a good rule.

I don't believe in chance.  I honestly believe that Heavenly Father arranged events so that Jarom would be there when I needed him and that Elizabeth would have that training just when I needed it.  Once again, my life has been spared.

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.

Money miracles

This cancer thing turns out isn't cheap.  Who would know.  We have been blessed though.  I really feel like God has looked out for us in this way as well.

Way back when, 20 years ago, when I bought health insurance for my family,  I decided to pay extra so that if we ever needed treatment "out of network", they would pay for it.  I paid for that option for almost 20 years and then my cancer struck.

The first surgery was very complex.  We found a guy at Huntsman who said he could do it but told us he had only done one in his life before.  We just didn't feel good about that.  So we set up appointments at Mayo, MD Anderson, New York Kettering, the top cancer hospitals in the country.  We felt like God would tell us when we found where we were supposed to be.

First stop Mayo Clinic.  We had a consult with the surgeon and others and felt we had our answer.  We cancelled the other consults.  We went to check out our insurance and to our surprise, they had dropped our "out of network" coverage without ever asking us about a month before my cancer.  I was appalled.  I called my insurance agent and he said that the law had been changed allowing them to do it.  Some sort of cost savings measure.  So we were on our own.  I can't remember how much that first surgery was but it was a lot.  At Mayo Clinic, you pay before they treat you.  I remember going to the financial desk a few days before surgery and the lady looking at the paper and then telling us "It looks like your cost will be $180,000.  How would you like to pay for that today?"

WOW!  We handed her all our credit cards and told her to max them out.  Then we ran home and used all our savings to pay them off and ran back and did it again and so forth, finally mortgaging our home and borrowing money from our children until we had enough.  We thought,  "At least we are going to get frequent flyer miles out of this."  I wondered how we would ever dig ourselves out of the financial hole we were digging but we just had to trust the Lord.

So, things went along.  About 9 months later we suddenly had a  purchase offer to buy an x-ray company that I had helped to start.  The offer was too generous for us to ignore so we sold.  Some people walked away from that deal with millions, not us.  But we did make a handsome profit.  After we paid our tithing, taxes and all that stuff it turned out that there was enough left over to pay off all our medical debts and still some left over.  What was left over would pay for the other medical debts that I would incur and then some.  The Lord was looking out for us.

About 3 months ago my father came by and we were visiting.  Talk turned to insurance.  He said, "I don't know why your insurance won't pay out of network, mine will"  I thought, "Yeah, well you have Medicare, kind of a different deal."  But he persisted.  He had some supplemental plan also that would pay out of network.  I had looked for this a year ago when Obamacare first began and found nothing for me.  But, I thought it was worth revisiting.

A little research revealed that things had changed.   Because of Obamacare, I could change insurance and now there were three policies that would pay (a lesser amount) out of network.  I looked at them as close as I could and then made the change.

The new insurance wasn't quite as good at IHC hospitals.  That was a bummer.  I soon found that out when I went to the emergency room.  But then we went to Florida.  We expected a similar overall bill to what we had paid at Mayo Clinic but hoped our insurance would help at least a little.  We took out a loan just in case it didn't.  When we showed up the day before surgery they wanted us to pay again before the procedure.  We sat down and the lady said, "Well, it looks like after your insurance you will owe $2300.  How would you like to pay for that?"  I almost fell off my chair.

A few days later when we went to the nuero-opthamaolgist JoLynne called to see if they would take our insurance.  They told us "No".  We called the insurance, they insisted that we should have coverage.  We went back and forth.  Then the sister missionaries came by knocking on our door.  There were surprised to find an LDS family here.  They were so sweet and asked how they could serve us.  We told them about our insurance problem.  They offered a prayer that the insurance would all work out and that I would heal normally.  JoLynne called back to the doctor.  Someone different answered and said, "Oh, yeah, it's all fine.  Your insurance is already in there and approved"  The next day we went and it cost us $0.  Even the lady at the desk commented "Wow, you have great insurance."  Again, the Lord is taking such good care of us.

Two miracles

Well, each day is a little better.  Yesterday my head felt like they had hit me with a two by four in the head a whole bunch of times.  Today just feels like a really bad headache.

There are two miracles that I should share.  It's important to me to share them so that God knows that I saw His hand in my life.  I do see His hand frequently.

When I came out of surgery one surgeon told me that my radiation damage was the worst he had ever seen.  Apparently they spent over an hour under a microscope trying to dissect out my facial nerve from the radiation damaged tissue.  In the end the nerve simply crumbled in their hands.  Dr Marx decided to simply lay the broken pieces back where they were supposed to be.  When I woke up they asked me to blink and I did.  None of the surgeons could understand how that was possible since they had all seen the nerve crumble.  One of the surgeons, Dr. Green, said, "There is simply no way you should be able to blink but here you are, we can't explain it"

A second miracle that may seem smaller but it was important to me.  On Monday I was feeling pretty depressed.  I guess some of that may be normal after a big surgery but knowing that didn't help.  I was in a lot of pain and the medication was only taking the edge off.  When I look in the mirror I see a pretty deformed face looking back at me.  I have no right jaw bone anymore and I lost of lot of teeth.  Then my eye wasn't focusing correctly, which for me is a really big deal.  If I can't focus, I can't do dentistry.  That means being forced to give up the profession I love so much.  We talked to my brother in law Troy.  He is a nuero-opthomolgist.  He said I needed to be seen soon by someone in his field.  He gave us some names of doctors in Miami.  We asked the medical staff for a consult and they said "It's essentially impossible to get an appointment with them.  Your best bet is to bring a bunch of food and just camp there and hope that they will look at you."

Somehow, with His help, we will get through

I guess all in all I was feeling like, "Wow, three and half years later and here I am back here and still not cured.  I'm so tired of struggling.  I wonder if God has forgotten me."  Those kind of feeling were pushing their way into my mind.  I sent Troy a video of my eye movement.  Shortly after he texts back and says, "Wow, crazy but I am at a seminar and who should I run into but the nuero-
ophthalmologist that I wanted you to see.  We looked at your video together.  He says he would be glad to see you and took your phone number and said he would call."  And then Troy said "Eric, you are not forgotten"  Those words and the miracle of him running into this guy right then was what I needed to pull me out of the dumps.  And the doctor did call about an hour later.  We have an appointment on Tuesday morning.

I know God doesn't forget any of us but in the heat of the struggle sometimes it is hard to remember.  My faith should be stronger.  I am grateful that when I go past my limits of faith that He reaches out in love to lift me up as only He can.

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.

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.

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.

Pictures of a miracle

Okay, I'm just going to tell you.  This is kind of graphic so don't look if you're squeamish.  But to me I feel like I am looking at pictures of the God's hand at work so I decided to share.  So I will start but putting  a pretty picture.  If you want to see the ugly pictures then scroll down.

I see God's hand here too.  Is there anything more beautiful than the Oregon Coast?

Okay,  Here come the pictures that are a bit graphic.  Please don't scroll down if you don't want to see them.  That's okay.  It won't hurt my feelings.

Picture taken in the back right side of my mouth May 10, 2014.  

Picture taken of the same area June 11, 2014

Picture taken of the same area July 11, 2014

Picture taken with an iPhone July 20th, 2014 in Boston when all heck broke loose

Picture taken yesterday (8.22.2014) of the same area, much closer up because my mouth can suddenly open again.  This is .after 21 days of chemo.

What I didn't take was a picture of the smile on my face and the tears of joy that came when I looked at this picture.  I will leave that to your imagination.

Round #2: Bring it on

Cool 1960 bike

Today I start my second round of chemo.  Goodbye appetite :( …   I can't complain, I have had a good five days which was a blessing.  I felt well enough tonight to go on a date with JoLynne.  We have a very old tandem bicycle, a Schwinn that my father bought in 1960.  Anyway, it still works and it's cool and retro.  We rode down to Utah lake.  It was great.

On Tuesday we went to see the infectious disease doctor.  He hadn't seen me in about 2 weeks.  He looked at me, looked at the mass in the back of my mouth and then sat down and said, in his Russian accent, "Doctor Vogel, your tumors are visibly smaller."  That was music to my ears.  I have felt better, better swallowing, less pressure on the side of my head, when I drink fluid it no longer shoots out my nose.  That was pretty annoying, by the way.  I asked him, "I have only been on chemo, 20 days, is it possible that they could shrink so quickly?"  His answer was "Well they grew that quickly, why could they not shrink quickly as well?"  I like doctor visits like that one.  Having my cancer respond to chemotherapy is such an answer to so many prayers.

Sometimes good things come out of bad.  I have a dear brother who I had little contact with for quite a few years.  Maybe because of my cancer we have reconnected.  He is a good man and has always been a champion for the underdog.  He came to visit last Saturday with his wife.  It was wonderful.  At one point in the visit he looked at me and said "I have been praying that God would take the cancer from you and give it to me"  For him those aren't just words, he would really do it.  It makes me a little teary eyed thinking about it.  I told him, "I wouldn't give it to you."

Well, we will simply continue to pray for a miracle in whatever form God chooses to send it.  We have faith that a miracle will come.

Joy and Hope

Well, this has been a challenging week and a wonderful week.  Life is that way sometimes.

John and Callie exiting the temple

Let me start with some good news.  This was the week my son John Eric Vogel married his sweetheart Callie Leigh Stettler in the Brigham City Temple.   This occupied most of the day on Friday.  I was concerned about my strength and ability to be a part of the events without becoming too tired but I was blessed.  One of my sweet nurses agreed to come early to the clinic to give me fluids and steroids so that I could feel better.  She met us there at 7:00 am,  We decided to drive our motorhome to Brigham City so that I could rest along the way.  My wonderful son Seth drove the whole way while I slept in the back.  It was like magic.  I climbed in the motorhome, fell asleep and when I woke up we were there.  Now I know why my kids like traveling like that so much.

My family, how blessed I am

The temple was just as you would expect, amazing.  We had a few minutes to wait while the bride and groom were coming.  I sat and looked at my sweetheart JoLynne across the room.  Thirty one years ago we knelt in a similar room at an altar of God and made covenants with each other and with God.  Where did the years go?  It seems like yesterday that the sealer stood and pronounced those words, "For time and for all eternity" over JoLynne and myself.  I felt like I was being transported through time.  I looked to my side at our older children.  I felt like my happiness was too great to contain.  The marriage ceremony was beautiful, simple and sacred.

Very creative car decorations.  Talk about green vehicle

Well, afterwards, a luncheon with family and friends and then a beautiful reception planned by Callie and her family.  I was tired and had to sit down at times but felt like the Lord gave me enough strength to get through.  I slept the whole way home again while Seth drove.  My cute little daughter Elizabeth, now 13 years old, came back and snuggled up by me while I slept.   They grow up too quickly.  I am grateful my daughter was still willing to snuggle up to her dad.

The next day I was pretty tired.  There was a lot to prepare here at our home for the open house.  Our dear friend and neighbor told us very firmly, I don't even want to see you out there.  She arranged for all the neighbors to come and clean up the yard and set everything up.  It was like an army descended on our home.  We are so blessed with good neighbors.

The open house was great.  I saw people who are so dear to me.  I am a pretty tearful guy these days and this was a tearful night for me.  A young man who I loved as if he was my own son come by with his family.  What a joy to see him with his children.  A dear former stake president who has prayed his heart out in my behalf.  So many dear friends.  You know, you can go through life collecting things, and we all do, and in the end they mean nothing for the most part.  But, the relationships we develop along the journey, those really mean something.  In my present situation that seems so clear to me.

Well, John and Callie got off on their honeymoon.  They were nice enough to text us when they arrived at their destinations which I appreciated.  What a wonderful adventure lies ahead for those two.  I can't even imagine.  I hope they are as happy as JoLynne and I have been.  That is saying something.

I wanted to be holy, just not this way

Well, regarding my health, it has been also good and bad.  I began chemotherapy about a week ago Thursday.  Ahh, chemo, such a joy.  Imagine a ballon.  Now imagine all the air is let out.   That is about how you feel.  No energy, no appetite, nausea, mouth sores, etc.  Oh well, it is a process to a desired end.  I had been having significant amounts of pain.  Even though I was taking some pretty heavy duty pain meds the pain still was effecting me.  I would wake up in the night just drenched in sweat as if someone had dumped a can of water over me.  Finally Tuesday morning, I got out of the shower and noticed that I was dripping from my face.  My face had been quite swollen.  Apparently the pressure built enough that finally the skin burst.  It wasn't pretty but my pain was almost completely resolved.  Later another small area burst and I saw further improvement.  I am now taking almost no pain meds and am pretty comfortable.  I have quite the wound on the side of my face but we will hopefully get into wound care tomorrow and have them help us to address that.  Saturday my son in law, a nurse practitioner, pulled out a flashlight and looked into the hole in my cheek.  Apparently you can see the bone and the titanium plates that were screwed in during surgery.  So, we will be very happy to have wound care involved in helping me to heal this wound.

In the meantime, I am working a little, not as much as I would like but as much as my energy allows.  I have a wonderful associate, Mike Merkley, really a gift from heaven who is helping me to take care of my patients.  JoLynne and I have moments of doubt and fear.  We don't know exactly where our path will lead.  We both still believe that God is going to work a miracle and that I will be healed.  We have this vision of us sitting on our front porch in a double wide rocker, watching our grandchildren play on the lawn.  We talk about that a lot when we get discouraged.

Our beautiful granddaughter

Today, my doubts seem less.  I sometimes wonder if it is the prayers of others that brings me that peace.   I do believe in the power of others faith.  I love and appreciate so many of you who have prayed for me through this whole long journey.  My nephew's son the other day came up to me and said, "Uncle Eric, we have been praying for you a long time.  Why are you taking so long to get better?"  Well, I don't know the answer to that question but I am grateful for the prayers.

Recovery

Well, it has been three weeks now since the end of treatment.  The doctors had told me to expect an increase of pain beginning about a week after treatment.  They were right.  The mouth sores were pretty spectacular.   Those began about one week post treatment.  Taste buds were gone, of course and pain with eating became pretty intense.  Basically my daily routine is to take tylenol and Ibuprophen every 6 hours and then at meal time to rinse with a viscous lidocaine solution and then a second topical anesthetic that is even stronger and then eat quick before the anesthetic wears off.  Oh, and I drink an "Ensure Plus" every meal to try and hold onto my weight.    After that I run to the sink and try to brush and floss and then spit blood for the next few minutes.  Then I rinse with anesthetic again.  Even doing all of that I lost about 18 pounds.   Frankly eating is no fun anymore.  After about two weeks my doctors here determined that I had a herpes infection on top of the mouth sores so they started me on Acyclover and that helped.  I was showing some improvement and then started getting worse again.  Another visit to the doctor revealed a sinus infection had come up.  I started some amoxicillin about two days ago and now I am seriously feeling better.  This morning I woke up and thought, "wow, I don't hardly hurt".  I haven't eaten breakfast yet but still, that is serious improvement.

My doctor from Mayo has been so nice.  He has emailed me multiple times checking on me and suggesting what I should do.  I couldn't ask for a more kind, caring doctor than Dr. Foote.  So, I think I can see the light at the end of the tunnel.  I have been so tired lately too.  I'm hoping that in the next few days that begins to grow less as well.

As always, I am so grateful for the prayers and faith of others in my behalf.  Thank you!  Four weeks ago we were told that there was no hope for my survival.  Today I am just dealing with a sore mouth.  That is a big step forward in my book.  Truly a miracle.  Thank you for helping that miracle happen for us.

By the way, here is a picture of the bird back in Minnesota that kept swooping down and grabbing my hair every morning when JoLynne and I were walking.  That was really weird.  I have cut my curls off now.  You just can't walk around with your hair looking like nesting material, it's just too dangerous.

One treatment down, four to go.  We met with the doctors today and went through what to expect again.  There is going to be some side effects but we knew that going in.  Their success so far with this kind of treatment has been impressive but it is so new that they talk about "9 month results for treating sarcoma".  We are just grateful to have options.  12 days ago our surgeon here at Mayo told us. "Eric, you are inoperable, enjoy what little time you have left."  That was a tough day.  Amazing what a difference 12 days can make.  The radiation oncologists basically told us that from a conventional surgery standpoint the surgeon was right.  Radiation surgery is another animal altogether.   I kept finding myself thinking, sometimes God does miracles straight out, but more often He performs them through the hands of others.  Either way, we are grateful for His miracles.

St. Paul Temple

It was surprising how painless it was.  After they bolted me to the table to be honest, I fell asleep.  After the procedure there was more tingling than pain.  They say that will get worse as I go along.  When I got home I was just dizzy and sleepy.  I think I slept about 2-3 hours this afternoon.

JoLynne and I went to the temple last night in St. Paul.  It was an wonderful session, deeply spiritual.  Cancer stinks but it does tend to pull down the barriers between the person and God.  I'm not sure I have ever received such clear answers as I have during this ordeal.

YUMM

Oh, by the way, JoLynne and I went to the world Spam museum yesterday in Austin Minnesota.  Pretty impressive!  When we drove up the attendant at the gate told us, "Go ahead and park, when you go in you will be met by your personal Spambassador".  Things like that just don't happen every day.  I can't think of the last time I ate Spam but apparently people eat it.  They have made over 7 billion cans of the stuff.  The world is such an amazing place.

A new day

Do you ever wake up and realize it's the weekend and just feel excited for all the things you can do and get done that day?  Sometimes I just lay in bed and think of what I am going to do, work in the garden, play with my kids, take my wife on a date, and on and on.  Just thinking about it makes me happy.  Then I jump out of bed and the day begins, a new adventure to experience.

A new day waits

In many ways that is how my life feels right now.  I feel like I have woken up from this "dream" of cancer with all that it involved.  I see my life looking forward not back and think of all the things I am excited to do and accomplish.  Just thinking about it makes me happy.  I have so many things running through my mind I don't know where to start.  Here is a list of words that I jotted down this morning trying to describe how I feel on this "new morning of my life"

• Gratitude
• Praise for God who looked down on me and helped me in my time of need
• Wanting to live worthy, let my life reflect my gratitude
• Humbled
• Loved and cared for
• Not alone
• Time is precious
• Life is fragile
• Appreciate the moment
• God’s touch is so gentle, almost imperceptible and yet so profound
• Family members who have passed through the veil still care about me and are involved in my life
• Gratitude for a wife who supports me in my trials
• Thankful that the pain is gone
• Grateful to run.  Good to have sore muscle pain instead of post surgical pain.
• How can I give back, who can I help?

So, it's time to jump out of bed and get to work.  No time to spare, time to get going.  Somewhere in the back of mind is still the fear of "what if" the cancer comes back but the sun is shining and I just can't dwell there.  I have too much to get done.  It's going to be a beautiful day!

Every day is a gift

I haven't posted anything for a while.  I guess the adage, "no news is good news" applies here.  Yesterday I completed my 20th radiation treatment.  That means I now have only 13 remaining.  February 27th will be my last day of treatment.  Monday I will spend most of the day getting my last dose of chemotherapy.  I informed my doctor yesterday that I would like this to be the last chemotherapy that I receive in my mortal life and I plan on having a long mortal life.  He just laughed and said that he would be okay with him as well.  It has been a journey.

Whenever I get discouraged I just think of all the blessings I have had along the way and it makes me feel better.  Radiation for the first two weeks was not too hard.  That is what they had told me to expect.  After two weeks the problems begin.  For those of you who have experienced head and neck radiation you understand what I am talking about.  Sores break out in your mouth and throat that make it hard to even talk let alone swallow.  Your taste buds cease to work entirely so everything tastes like straw.  Your saliva all goes away and that doesn't help the swallowing either.  By about 2 and a half weeks into treatment that is where I was at.

I am usually pretty good about dealing with pain but it was getting past my limits.  I don't take medications when I can avoid them but I was finding it necessary to take 800 mg of ibuprophen three times a day just to function.  Even with that it only took the edge off of the pain.  I should have been more proactive in addressing the mouth sores from the start but I wasn't.  I meet with the doctor every Wednesday.  I remember going in and expressing my concerns.  They were kind but didn't have a lot of good solutions.  I asked if there was any chance I could get over the sores and they said that they hadn't seen that happen.  They said I would be lucky if the sores stayed only at that level through the remainder of treatment.   They told me that I could have round the clock narcotics or possibly an NG tube to allow me to continue eating if things became worse.  My mouth looked like one big canker sore.  It felt like the sores were in my ear, throat and sinus as well but I couldn't see those areas.  I left feeling pretty discouraged.  About a week before I had made a few changes in my protocols in my mouth and throat care but so far it wasn't helping.  I really didn't want to spend the next four weeks on narcotics.  That night I went home and in my prayers I plead with Heavenly Father for an answer about what I should do.  There was a sense of peace but not much more.  Thursday I woke up with a slight decrease in pain.  This was the first time in a week that the pain was less instead of more.  I got up and took my ibuprofen.  This time it more than took the edge off,  I almost felt human again.  It felt like a miracle to me.  I was still in pain but it was manageable again.  I cried off and on all that day, tears of gratitude.  (I think my office staff think I am an emotional mess.)  I didn't need all the pain removed, just enough that I could deal with it.  I felt like that prayer had been granted.  The improvement continued through the next 6 days.  When I met with the doctors the next week they wanted to know about my pain levels and if I was ready to move to higher levels of medication.  When I told them that I was feeling better they were somewhat incredulous.  I am just grateful.

Well, two and a half weeks will soon be done with.  I am praying for a life free from cancer from this point onward.

We have been so grateful to be able to be home while I am receiving my treatments.  In January my sweet daughter Elizabeth turned 12 years old.  She was pretty excited.  It was a great day.  We only let our children have a "Friend party" once every four years.  This was the year for her.  She loves Dr. Who so she planned a Dr. Who theme party.  It was cute.  Our son Peter, who is preparing to leave on a mission to Spain went through the temple for the first time.  Words cannot express how I felt.  What  joy to be in the temple with him and all our older children.  I hope it is symbolic of a day when we will all stand together in God's presence worthy and full of joy.  Watching my grand daughter discover her hands and learn to sit up is irreplaceable.  I know I would have received great care at Mayo but I am grateful that the doctors at Mayo were willing to work with the doctors here so that I could stay home.  Every morning I wake up and think of each day as a gift from God.  None of us know how long our mortal journey will last.  We should relish every day.  Take time to enjoy a child's laughter, to watch a sparrow at your bird feeder, to enjoy the warmth of another person's embrace.  I am trying to live that way.

We love the temple!

We had the opportunity to go to the temple this evening.  Our son Jarom came along with us.  It is always so nice to be in the temple, especially with family.  It feels like coming home.  This trip had a special purpose, to try and get an answer about what we should do with chemotherapy.  One of the sweet things about the temple is that I seem to be able to get answers to my prayers more readily there.  This trip was no exception.  After careful thought and prayer both JoLynne and I received an answer, in the temple, that it is time for me to stop chemotherapy.

I have always found it more difficult to get answers to prayers when the matter I am praying about has such profound personal emotions associated with it.  It is hard for me sometimes to separate my personal feelings from answers from God.  The answer that we received in the temple yesterday was unmistakeable.  We are all relieved that I can begin to move on and regain my strength.  Already, on last Thursday my immune system and my red blood cells had begun to rebound somewhat according to the doctor.  My body seems to be coming back to life again.  I feel like I am waking up from a dream.  I still don't have the strength that I had prior to chemotherapy but I feel so much better than a week or two ago that the contrast is amazing.  I am so grateful to feel good again!

I have learned so much these last three months.  Perhaps in another post I will talk about that.  It's a little close to home still to talk about.  One effect of all this has been on my tear glands.  They just seem to work a lot more often than they used to.  Maybe my heart is softer or maybe I am just getting old and leaky.  I look at my wife and my children, I think about the many miracles that have occurred and my heart is full.   I am just so grateful to be alive!

The Provo temple.  Where JoLynne and I were married.   It continues to be a special place for us

Chemo on hold

Today was to be the start of my fourth round of chemotherapy.  We showed up at the doctor ready and dreading but willing.  They took a sample of my blood, like always, and then we went to wait in the consult room.  Dr. Tudor came in and began the conversation with "You know, Eric, you are highly unusual".  Why do I always have to be weird?

So, my white blood cell count has continued low and has actually gone slightly lower since last week when it was too low to proceed.  Since it has been four weeks since my last treatment that is not what we would have expected.  In his opinion my body is not responding well to the chemotherapy and he wasn't comfortable going forward with the way things are going.  He knew that we were going to Mayo this next week and wants to wait and hear their opinion before doing anything more.  He then said that perhaps we should stop at three rounds and call it good.  We will have to see what the doctors at Mayo think of all that.  He then said that he thought it was divine inspiration that we chose not to do Methotrexate way back at the start.  In his words, "Had we done methotrexate, it is quite likely it would have killed you....okay, maybe I could have saved you but it would have been close".  For those who follow this blog you may remember that the doctors were split 50/50 on whether or not I should do methotrexate.  It was a hard call for us but we took our question to the temple and asked the Lord.  We received a very clear answer back then that we shouldn't do methotrexate.  It should be no surprise that Heavenly Father knew from the start what would be best.  I am so grateful that once again I have been divinely protected.

Cute little birthday girl

Well, after the doctor left I was dumbfounded.  JoLynne stood up ready to leave and I was just sitting there speechless.  I guess I had an expectation that I would need to suffer for so much longer and now I am being told that perhaps I won't.  I guess it is too early to know that for sure.  We will see what they say at Mayo.  So, here I sit, feeling great when I expected to feel lousy.  I'm not complaining.  Today is Elizabeth's eleventh birthday and it seems I got the nicest present.  When I mentioned that to her, she said, "Having you feel good is the nicest present for me too, daddy".  Boy, I am blessed with good kids.

We leave for Mayo on Monday.  We should have answers from them by Tuesday or Wednesday I would think.  I don't want my cancer to come back but I don't want to die from chemotherapy either.  I am sure the doctors will figure out what balance of risk is best.  In the meantime we are praying that they will be inspired as they consider my case.

Thankful

Just a little bump, probably the onion rings

So, it has been a busy week.  I have felt great and as a result I have been able to work more.  In addition we have had a series of social events.  Friday we had an open hours for the office to let everyone see our remodel and wish them a merry Christmas.  Last night was the Stake Christmas open house and today is our family Christmas party.  It just seems like I have been "running".  It is so nice to feel better and able to do more.  At our office open house I was not very good and shook hands with lots of people.  That got me in trouble with my guardian angel (JoLynne).  My friend, Rella Christensen, a pHd microbiologist who has been looking out for me is going to give me a scolding too.  So last night JoLynne and I made a bet that I couldn't go the whole night without shaking someones hand.  We usually bet a kiss or something so I always win either way but there is the moral victory of course.  Anyway, I won the bet last night and went the whole night without shaking a single persons hand.  The real prize was having JoLynne be happy and not worried.  When we got home from the party neither of us had eaten much.  I just can't figure out how to get food in my mouth with a mask on.  So, it was 9:30 pm and we hadn't really had dinner.  JoLynne said, "so, what do you want to eat?"  I was kind of embarrassed but I told her I was really in the mood for onion rings.  She just started laughing, "You are so pregnant!" she said.  For years I always offered to have the next baby.  I always thought it was a safe offer.  Little did I know.  I'm not showing yet by the way. (okay, maybe a little)

I have always appreciated having good health.  As a matter of fact I always made a point of telling Heavenly Father how much I appreciated my health in hopes that He wouldn't feel the need to take it from me.  Well, that trick doesn't work.  This week, feeling better, has truly made me appreciate how good it feels to feel good.  I'm not looking forward to the next round of chemo starting Wednesday, but it helps to know that after a few dark days that I will have days when I feel well.

We are leaving for Mayo Clinic on Monday.  We have appointments all day Tuesday and then we will be flying home Tuesday night.  I am excited.  One of my appointments is with physical therapy.  They have some electrical methods of accelerating nerve recovery.  They call it "facial animation."  Usually that is what happens to my face when JoLynne walks in the room.

I love visiting with cancer survivors.  Some dear friends came to the open house.  I remember feeling my heart go out to my friend while his wife suffered through cancer.  On Friday I looked at her with her beautiful hair and a smile that spoke volumes about her courage.  I have to admit I ran my fingers through her hair just for the joy of seeing her so normal.  It makes me think, "I am going to get there."

I have been so grateful for countless acts of kindness.  I could never name all the people who have reached out to us with helping hands. This last week, a friend came by while I was taking care of patients.  We have been friends for many years.  He somehow knows my situation better than some.  Anyway, he was so kind and caring.  He offered some help that was deeply meaningful to me.  I couldn't stop crying after he left.  I think I cried for two hours.  He isn't alone of course.  Every time I turn around someone is lifting and helping.  I've notice that since my diagnosis I never have anything in my inbox at the stake center.  Last night I confronted the other counselor and said "Why is there never anything in my inbox anymore?"  He just smiled and said, "Eric, we are going to get through this thing together"  People are so good and I am so grateful.