Sunday, September 28, 2014

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.

Wednesday, September 3, 2014

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.