A time for inspired decisions

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

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

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

family at the airport

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

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

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

Spencer and his mom

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

A good day...mostly

Yesterday we had the chance to visit with several doctors.  The infectious disease doctor, who we love and is so careful about everything, said, "I really don't see any evidence of infection.  You are doing great.  Call me if you need me."

Then we went to the oral surgeon.  Wound care wanted him involved early so that we could talk about what to do if my bone transplant has died etc.  He took a look at my pano and said, "I don't think your fibula graft has died.  Usually it looks moth eaten when it dies.  I think there is some dead bone that will need to be cleaned out but not the whole graft."  He felt like when chemo is done and we have a handle on this cancer we could do hyperbaric therapy again and surgery.  The surgery didn't sound too bad.  Most of the important structures that they would normally have to cut through are already gone.  He also talked about reconstruction of my sunken cheek.  Apparently they can take a muscle from your chest, turn it over and thread it up through your neck, into the area that needs to be filled.  Again, he said that he thought this could be done locally.  Yeah.  I have joked with JoLynne about having a breast implant put in my cheek when I am done.  I keep telling her that I only need an "A size", that shouldn't be too expensive.  Anyway, we will cross that bridge when we get to it.  I plan on getting better, I love it when people act that way too.

On the not so good side, I went home after that and sat down to lunch.  I was being good, eating soft foods when suddenly I started to bleed and not a little.  It quickly filled my bandage and was falling out on the table.  JoLynne grabbed me and ran for the emergency room  I had a rag on it which was filling up.  The waiting area was pretty empty and they checked me in and said "Sorry, we don't really have a room for you.  Why don't you just sit there until we have a room available."  We sat for an hour, JoLynne and I and my blood soaked rag.  I thought, "If I were having a heart attack would I be sitting here waiting for a room?"  Who knows.  Anyway, after an hour the bleeding had stopped and they were ready for me.  Oh brother.  They tested my platelets and they were low but not too low and basically they had no idea what to do so they simply put a new bandaid on my face.  After the bandaid it still took them over an hour to discharge me.  Are all emergency rooms run this poorly?  I wonder.  In the meantime, don't have a heart attack in Utah Valley.

Who are those youngsters?

Later when we got home our bishop and stake president came over to give me a blessing.  That was more valuable to me than what they did at the emergency room.  They gave JoLynne a blessing as well which I greatly appreciated.

Today I am tired but good.  It is our 31st anniversary today.  JoLynne informs me that we have been married 11,323 days.  I can't describe how blessed I have been by having JoLynne in my life.  She is my soulmate, my sweetheart, my support when I can't stand on my own, my confidant, my darling wife.  Words cannot express the gratitude I feel for her.

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.

laughter is good

So, I am doing pretty well.  Since this is the fourth time I have done chemotherapy you would think I would be good at it by now.  I must be a slow learner.  I have had two good days the last two days and that is a blessing.

The other day we were in wound care for the hole in the side of my face.  They are so good there.  As the nurse was reviewing my history and condition  she asked how my appetite was doing.  Well, my appetite isn't great so I told her so.  She asked if I was taking any medication to help my appetite.  I told her I wasn't even aware of any.  She smiled and said, "You bet, you can take Canibus, (marijuana) to help your appetite.  I just started to laugh.  The thought of me taking marijuana painted a funny picture in my mind.  I don't even use alcohol mouthwashes.  I think I will just keep forcing the food down for now.

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.

READY TO RUMBLE!

There is a process when one gets really bad news, unfortunately I am becoming familiar with it.  Perhaps it is different for everyone.  For me it goes like this

• Shock
• Sadness
• Sadness mingled with hope
• Hope overcoming sadness
• An overwhelming desire to get in the ring and fight like crazy.

So, I am at that last step now.  Cancer cannot rule my life.  I am not powerless.  I have a lot of fight left in me, just watch.

This morning we went to visit the new charity clinic that Henry Schein has very generously built to allow me to expand my charity work.  It was so beautiful!  I am just filled with desire to get in there and do some good.  For those who don't know, Schein is one of the largest dental suppliers in the world.  Out of the goodness of their hearts they offered their resources to build this clinic and cover all of it's operating expenses so that we can help more people in need.  Their generosity is like a gift from Heaven.  I am so grateful to them.

Then we went to the doctors.  The infectious disease doctor thinks my swelling and fevers are all due to tumor not infection.  Unfortunately, our oncology doctor is out of town until Tuesday.  The ones on call were reluctant to let me get started.  Basically they didn't want to take the responsibility if something went wrong.  They were very determined to have us wait until Tuesday.  JoLynne was equally determined that we get started today.  (By the way, you probably don't know this about JoLynne but she can be VERY strong willed at times, especially if someone she loves is threatened)  We seemed to be an an impasse.  We really feel that this cancer is growing very fast and that five days would make a difference.  Finally the doctors here agreed to call our doctor at Mayo.  He agreed with us that treatment should commence now.  The doctors here finally gave in. 

So, here I sit, hooked up to chemo.  Ring the bell, I am ready for a heck of a fight.