Sunday, November 24, 2013

Stress and Relief

Well this last week I had a new PET/CT scan done.  Initially the next scan was supposed to be December 10th but I had noticed some swelling around the corner of my jaw and some tenderness.  I contacted my doctors and they thought it was worth it to move the scan date up.  So, the scan was taken  on Thursday.  Initially I was told that the results would be back the next day.  We were leaving for Cancun on Saturday with friends.  I couldn't decide if I wanted to know or not before our trip.  Finally on Friday I thought, "Just look your enemy in the eyes".  So, I went to the hospital and requested the results.  It turns out that they only read these complicated scans once a week on Wednesdays so there were no results.  Since I was there I had the images sent to Mayo to be read along with the read that we will have done here in Utah.

I think if you haven't had cancer it is hard to explain what it is like to wait for the results of a scan.  To be frank, most of my exams have come back with new cancer detected so I am understandably apprehensive of scans.  It's hard not to let ideas creep into your head.  I try to push them out but they keep pushing back in.  The "What if.." thoughts are agonizing.

We left for Cancun Saturday.  It was beautiful, of course, but still those thoughts hung over me, like a dark cloud.  Our second day there JoLynne and I spent floating down a jungle river in tubes and snorkeling in a crystal clear bay.  It was so relaxing that I found the dark thoughts dissipating.  They were still nagging at the edges but not on center stage anymore.   The rest of the vacation was just wonderful.  Friday, we returned home from swimming in some of the local cenotes, (water holes all across Yucatan).  When we got to our hotel I checked my email and there was a note from Dr. Foote at Mayo.

Opening it was like standing in front of a firing squad.  Gratefully the news was good.  Dr. Foote had the radiologist at Mayo read the images and they felt like I was cancer free.  One area was of slight concern so they want another scan in two months but the evidence pointed away from new cancer.  JoLynne and I just stood there and hugged each other and cried.  We are so grateful!  The firing squad had blanks in the guns this time.  YEAH!

A nice ending to a trip to Paradise.  Thank you for your prayers and support.

Sunday, November 3, 2013

"Life is beautiful"

And I even got a certificate 
Yesterday was my last hyperbaric dive, 40 dives completed!  I am feeling pretty darn good.  I would guess that my pain is 80% resolved over where it was.  They tell me that I will continue to improve over time now that some circulation has been re-established.  My energy is significantly improved.  I used to wake up about four times a night to apply anesthetic to my mouth.  Now I am waking up just once.  It used to be that I would just lie on the couch waiting for the medicine to work.  The pain was terrible and I felt like a zombie.  Now I exercise while the medicine is kicking in.  It's kind of weird but, why not.  Last night I was up at 4:00 am to medicate and I ran up and down my stairs 30 times, did 30 push ups, 50 sit-ups, 25 dips and some pull ups and then jumped back in bed.  I think my kids downstairs think their father is crazy, they may be right.  The funny thing is how easy it is to fall asleep again when I get back in bed with JoLynne, maybe it's easy because I am exhausted from exercise.

"The mouth"
With better energy I was able to decorate for Halloween this year.  That hasn't happened in three years. We have a silly tradition where I construct a huge mouth on our front porch

.  To get to the door you have to walk into the mouth and across a big red foam tongue.  When I open the door the mouth snaps shut behind the trick or treaters.  The kids love it.  It's amazing what you can do with rope and pulleys. It was fun that I felt well enough to put it up this year.
Dumb comic I ran across

Anyway, I am grateful to feel so well.  My next scan is going to be December 10th.  We are praying that I continue cancer free.  Thank you for all of your faith and prayers in my behalf.  I truly believe it has made a difference.

Wednesday, October 16, 2013

Dive baby Dive!

"The Tank"
Today I finished my 23rd hyperbaric dive.  That means I have spent 46 hours in that tank and watched 90% of 23 movies.  Just once I would like to watch the end of a movie.  The plan is for 40 dives so I have 17 left.  They had told me not to expect much until about dive number 20.  I think I started to see some subtle changed around dive 18.  Now the changes are beginning to be more distinct and they are changes for the better Yeah!

The most important change is in my pain level.  Since about Mid July I have been living on a custom topical agent that I have formulated by my pharmacist.  If I don't keep my mouth constantly numb I have intense pain that is hard to describe.  I guess my best description is that it feels like someone is driving an ice pick through my ear into my tongue.  Not pleasant at all.  Speaking and eating add to the pain.  So, I live on Ibuprophen and Tylenol taken by the clock combined with my topical applied every two hours day and night.  Around dive 18 I noticed that I could go a little longer before running for my topical.  Next I started skipping ibuprophen doses when I was too busy to take them and... surviving.  Last night I woke up when the pain woke me and I thought "I could almost bear this without medication" but then I got up and took some anyway because I am a wimp.  Anyway, I am getting better and....I AM SO HAPPY!  I love hyperbaric therapy!

All the comforts of home
One of the interesting things about this whole journey are the people that you meet along the way.  When I began hyperbaric therapy I was diving with an ENT surgeon.  He was out walking his dog when suddenly he went blind in his left eye.  He ran to the doctor and the found that his left retina had lost all of it's blood supply.  They didn't know if it was a stroke or some other reason that caused the blood to quit flowing.  They rushed him to hyperbaric.  His wife told me that they couldn't locate their home teachers so they asked the on-call wound care physician and the hyperbaric tech to give him a blessing. (I love living in Utah where you could make such a request and have a high probability that they would both be worthy priesthood holders)  So, they gave him a priesthood blessing and put him in the tank.  After his second dive 75% of his vision suddenly re-appeared.  Subsequent dives continued to show improvement until all he had left was a small dark spot in the center.  Another fellow in the chamber knelt down in his workshop and cut his knee.  He didn't think much about it until a week later when it started to swell and get red lines.  He went to the ER and they began treating him for cellulitus.  As he was waiting for another treatment a surgeon happened by, not called for, looked at his leg and said, "This isn't cellulitus, it's flesh eating bacteria!"  They took him right into surgery and thanks to their skills and hyperbaric it looks like he won't lose his leg.  Anyway, the stories go on and on.
Look what we found in the packing peanuts!

I am grateful to live when I do and to have such miraculous treatments available.  My tongue and ear are grateful too.

My dear little grand daughter has begun to walk.  She is so proud of herself.  I am so grateful to be alive to watch the miracle of her little life unfold.

Wednesday, September 25, 2013

Slowly healing

Well, we realized this week that it had been exactly two years since since my diagnosis of cancer.  The exact date was September 21st, 2011.  Wow, that has been a long two years!

I am recovering slowly from the last radiation treatment that was rendered.  The base of my tongue received a substantial dose of radiation.  Unfortunately, the tissues heal slowly when exposed to these kinds of things.  I have been surprised at how tender that wound has been.  It makes life interesting.  For example, I can't really move my tongue side to side when eating.  It is such a small thing that you would never even think of it but it is important.  Without the ability to move the tongue from side to side you can no longer control the movement of your food.  This makes it very difficult to guide the food to your teeth for chewing.  I find that if I carefully place a piece of food in my left cheek space then I can guide it to my teeth with my cheek, chew and then swallow.  If I just put it in the middle, like normal, then my only choice is to swallow it whole.  Kind of annoying.

The pain in my mouth is pretty substantial.  I don't have a lot of choices.  I'm not willing to take narcotics so instead I pretty much live on 20% lidocaine solution that I have custom made at the pharmacy.  20% lidocaine is 10 times stronger than the stuff that we inject for dental procedures.  It also has 4% tetracaine, another anesthetic.  If I rinse with that stuff I stay numb and fairly pain free for 2 hours.  I hate to admit how much of it I am using.  Suffice it to say, I get up every two hours through the night to numb my mouth with this stuff, and I use it pretty regularly through the day as well.

I talked to Dr Foote at Mayo about the slow healing of my wound.  He said this was normal and gave me several suggestions including hyperbaric therapy.  Dr. Foote, by the way, is amazing.  He emails me on a regular basis just to check up on me and always answers promptly whenever I ask him a question.  He is probably the most attentive Dr. I have ever met.

Anyway, we went to meet the hyperbaric team this week.  It is basically a big pressurized tank.  They put you in it and raise the pressure to about the level of a 45 foot deep dive.  You have a plastic bubble over your head which gives you pure oxygen to breath while under pressure.  Apparently it hyper-saturates your blood with oxygen to the point that even wound areas that lack capillaries will begin to get oxygen.  By doing that it will let the wound heal and regrow a blood supply.  We are talking to the insurance now but hopefully I will start this treatment in the next few days.  It will require two hours a day for the treatment.  It it helps it would be well worth it.

Other than the annoyance of my mouth pain, life is great.  I am still able to work full time, I love being with my wife and children.  I love playing with my grand daughter.  Summer is slipping away into fall and the world is painting itself the most beautiful colors before it goes to sleep for winter.  I love being alive!

Provo temple at sunset.
I have been so grateful for the temple in my life.  The other night, JoLynne and I went to the temple.  I was changing my clothes in the locker room when I was simply overcome with feelings.  It's hard to describe.  I guess the best I can do would be to compare it to going to a home that is full of happy memories for you.  For me that would be my grandma's house.  Not just memories but all the love that is associated with those memories.  That is how I felt as I stood there in the temple.  Overwhelmed with feelings of love and memories that I couldn't quite piece together but so real.  When it says, "The house of the Lord" on the front of a temple, I believe it.  I have felt His presence there.  It is a feeling full of love, warmth and kindness.

Thursday, August 15, 2013

A piece of good news

Well today we just returned home from a family vacation at Bear Lake.  It was wonderful.  More about that in a minute.  Just as we were leaving the beach this morning I received a call on my cell phone.  It's amazing how you really can't get away from things very well anymore.  Anyway, in this case, it was a phone call I was glad to receive.  It was Dr. Robinson, my oncologist from Mayo, calling to give me information on the genetic analysis of my tumor.  As you may remember, we sent off samples of my tumor to a group called "Foundation" several weeks ago to have a genetic analysis done looking for weaknesses or characteristics that could potentially be attacked.  The results were in today.

It turns out that they did find a weakness in my cancer.  He told me the name of the gene but I can't remember it.  All I know is that it had a bunch of letters and numbers in the name.  This particular gene has a drug that has recently been discovered that can attack that specific gene.  The information is early still but it has come far enough that there are phase one clinical trials being done in at least six locations throughout the country and additional trials in France.  As I understand it, phase one clinical trials mean that it hasn't yet been proven to be effective but there is enough favorable evidence in animal models to justify and allow trials on humans.

These new "genetically targeted drugs" are probably the future of cancer treatment.  Most oncologists agree on this point.  At some point these will replace chemotherapy and other treatments since they can kill or suppress the cancer with very few side effects for the patient.  Right now there is a race to identify unique cancer genes and develop drugs to attack these unique genes.  The problem now is that the research is so new.

So, what does this all mean for me.  Basically we are hoping and praying that my cancer is gone.  However, if it were to come back it gives me more options.  That is good news for me.  To be honest it brought tears to my eyes when he told me.  This stupid cancer seemed to have superhuman powers.  It felt so good to hear somebody tell me that they had discovered that it had a weakness.

Overall I am improving slowly.  I had an infection earlier this week that really took the wind out of my sails, so to speak.  I have been on an antibiotic now for several days and I am feeling much better.  I think that it didn't hurt to have a few days off work when I could take a nap when I was tired.

It's still hard to eat but even that is improving.  Today I ate two pieces of pizza and some spaghetti.  Granted I have to take two tylenol, two Motrin and then rinse with dental topical anesthetic before eating but still, a week ago I was doing all that and there was no way I could have eaten those things.

We just returned home from Bear Lake on a family vacation.  It was wonderful!  Simple tender mercies.  We had rented a condo to stay in.  We are pretty careful with our money these days so we rented one of the less expensive places that we could find.  Just as we were leaving from my nephews wedding to go to Bear lake we had a call from the property manager saying that there had been a mix up and our condo was not available until the next day.  He was apologetic and offered to let us stay in a different property for one night until the condo became available.  We don't usually like to make waves so we said that would be fine.  We we arrived at Bear lake we were wondering what time we needed to move from one place to the other.  At that point they said, "Well, if you want you can just stay at the alternate place and not move.  Why don't you check it out and call us"  Well, the alternate place was just beautiful.  Much larger and nicer than the one we had rented.  Actually JoLynne had looked at that very property and passed it over because it was more than we could afford.  It's a simple thing but we were grateful.  It was so nice to spend time with family.
Adam and Elizabeth on the "Tube"

Spencer's first time on a wakeboard

Cute Vivian going for a stroll with Grandpa

The view from our rental home windows

Morning walks with JoLynne
A beautiful day on the beach

Wednesday, July 24, 2013


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.

Monday, July 1, 2013

Four down, one to go!

Pretty photogenic right?
I just completed my fourth treatment.  Mostly I feel pretty good.  My jaw feels stiff and bruised, my taste buds are gone again and some sores are starting but really not too bad.  Way better than I have felt with previous treatments!  I walked four blocks home from my appointment today.  They say the effects will be worse next week but frankly, so far, this is nothing compared to what I have been through.

This is a High tech machine!
We went to a local ward for church yesterday.  People were so nice.  Everyone introducing themselves and asking about us.  I met a former student of mine who is now studying here.  Someone invited us to a fourth of July party and then said, "If you have to come back again, you are welcome to stay with our family in our basement.  We have room and you could save some money."  I had barely met these people not 5 minutes before.  Isn't the gospel an amazing phenomenon?  I wish all people were so kind to one another.  The world would be an amazing place.

Yesterday after church we drove to Wisconsin to look at the Mississippi.  There is a park bench down there that we happened upon about 18 months ago that we believe had a message from God to us.   We have looked but  have never been able to find again.  (See blog from 10/9/2011)  Anyway, this time we managed to find it.  The writing on the bench was faded but still legible.   It says;

"It's okay to have bad day's, hold on, be strong"

Still good advice 18 months later.

This blog started out as a way to keep people who were worried up to date about my treatments.  I hope that it has served that purpose well.  Like many things it has grown into something somewhat unexpected.  Unless you leave a comment I don't really know who is looking at this blog.  I can, however, see maps of where it is being looked at.  It is something that I don't fully comprehend.  Most of the views are from the United States, that isn't surprising.  What does surprise me  is the number of people who are following from countries all over the world.  From what I see I am approaching nearly 70,000 views.  Many of those viewing are from Russia, Canada,  Latvia, China, Germany, Spain, Denmark etc...  I have traveled to many of your countries providing humanitarian service as a dentist.  Perhaps some of you are following for that reason.  Perhaps some of you are people I have never met.  For whatever reason, I am happy to have you follow along.  I hope that my experiences have in some way helped you to meet your own challenges in life.  The prevailing message that I hope my blog conveys is to live with hope.  For me that hope largely comes from my faith in God and from the faith and love of others who surround me.

The shag carpet car.  
Some day it will be my time to leave this life.  I don't know when that time will be.  I plan to enjoy every day that I am allowed here and to make a difference for good in the world.  When my time comes to leave this life I will leave it with hope as well for a world even better than this one and an assurance that my separation from those I love is only temporary.  I have no doubt in my mind that such will be the case!  I don't know the challenges you each face but I hope and pray that you can find courage and peace as you face those challenges.  Look in your heart, I think you will find that you don't have to face them alone.

Okay, here is the random thing we saw on Saturday.  We made a wrong turn and came upon the most lovely car I have seen in a while.  I'm not sure why someone would do this but it is unique.  The car is completely covered in shag carpet and then has a few bones glued on to make it extra special.  The question is:  Would you wash your car or vacuum it?

Wednesday, June 26, 2013

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.

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.

Tuesday, June 25, 2013

Here we are, back in Rochester again.  I tell you, we should have bought a condo for all the time we spend here.  Oh well, a little late for that I hope.

We arrived on Sunday evening and started appointments bright and early Monday morning.  Sunday night I noticed for the first time that the gums behind my lower right molar are bulging upward.  I'm certain that this is from tumor growth.  Perhaps it was there before and I didn't notice but it startled me.  I spent a sleepless night on Sunday worrying about how fast the tumor is growing.  I need to simply have more faith but sometimes doubts creep in.

Monday morning I was tired but feeling a little bit better.  One of the challenges that they are facing is deciding what is cancer and what is burned tissue from my former radiation treatment.  To help them decide they had be get a PET scan on Monday morning.  I was pretty sure this involved a cat or a rabbit but I was wrong.  Instead they hook you up with an IV and inject your body with radioactive glucose.  (They warn you in their instruction sheet that you will need a letter to fly in the next 24 hours as your body will set off airport detectors).  Anyway, you then lie in a dark room for an hour while your body absorbs the glucose.  I guess the idea is that cancer tissue will absorb more glucose than regular tissue.  Then they put you in a CT scanner and scan your body then you lay on this table full of radiation sensors for another hour without moving while it maps out where the radioactive isotopes have gone.  They then lay the map over the CT image.  In my case they needed me to stay absolute still so they bolted me to a table with this mask thing that they made for my face.  It was much tighter than the one made in Utah.  It was so tight that I couldn't move my eyelids.

Next we went over and had a core biopsy done of the area that was hard to distinguish.  I have a fair amount of nerve damage in that area so the pain was very minimal.  Every cloud has a silver lining

JoLynne and I together always
Our radiation oncology surgeon called back later in the day to give the results of the PET scan.  Gratefully no cancer in the lungs.  Some of the areas of question also appear to be cancer free.  One lymph gland in my throat had some suspicion.  The radiation surgeons have decided to include that area in the gamma knife surgery.  The biopsy results should be back on Wednesday.

So, today we have no appointments.  I think we will drive to Minneapolis and go to the temple.   Tomorrow the party begins.  I'm not too nervous, mostly just anxious to get things moving and to destroy this cancer once and for all.

Last week was supposed to have been our family vacation until my health altered our plans.  We had a few days between our visit on Tuesday and our return on Sunday so we decided to go camping close by.  We took our motorhome up to Wasatch mountain state park, about 40 minutes from our house.  Some of our children had to work so they came up when they could.  Shanelle and Vivian came along. Mike was at a nurse practitioner conference in Vegas.  It was only a few days but we enjoyed it.  Nice to sit around the campfire, go for a few walks, play games and just enjoy being together.  Hopefully we will be able to get out again sometime later this summer.

Friday, June 14, 2013

Well, the saga continues....

We have had mostly good news lately.

After several calls, the oncologist at Mayo finally called us back.  In the meantime several other parties had weighed in on my case.  The radiologist at Mayo re-read my MRI and his conclusion was "One tumor with other areas impossible to differentiate"  This is more consistent with what we were told by the radiologist here who said "One tumor with other areas consistent with radiation edema"  Irregardless, these are all better reports than the surgeon who basically felt like the whole area was full of cancer.  My dear friend, an oncology scientist, called it the VOMIT phenomenon, (Victim Of Modern Imaging Technology).

Also our friend, Dr. Foote, the head of radiation oncology at Mayo, also a good friend and the Stake President in Rochester, looked at my case and felt that we should use Stereotactic Body Radiation Therapy (SBRT) to cut out the tumor.  This is sometimes called Gamma knife or Cyber Knife.  It's kind of like Star Wars stuff.  The tumor is mapped using CT scans into a computer and then robots operate on you using intense focused radiation as scalpels.  It's supposed to be super precise.  They never actually cut your skin, the SBRT can destroy tissue wherever they want without a surgical entry.  After talking to their sarcoma board at Mayo they all agreed that chemo was not a good choice at this point and that SBRT was a better choice.  As of right now we are scheduled at Mayo next Tuesday for the planning appointments and one week later for the surgery.  Recovery is supposed to be pretty good.  Not too much pain or time down.

In the meantime, we are working on backup plans just in case.  We are having our tumor analyzed genetically looking for any weakness that might be attacked.  This is being done at Harvard by a group called "FoundationOne".  This takes about 3 weeks to analyze.  We are also going to Huntsman Cancer institute on Monday to see if they have any other bright ideas.  And in addition we are making arrangements in Philadelphia at the Fox Chase cancer institute, to gather living tumor tissue prior to my surgery.  They are doing research where they implant your tumor into mice and basically give them your cancer.  They then use the mice to try out various chemotherapuetic attacks to see if any combination of chemicals might prove to be effective against the tumor.  They will take about 3 months to have results using this technique.

Mostly our good news is how we feel in our hearts.  Both JoLynne and I are at peace.  Others have told me the that they have the same impression.  They have felt that everything is going to be fine.  We called Peter on Sunday to tell him what was going on.  We had asked permission from his mission president before calling.  The mission president invited Peter to his house to make the call so that he and his wife could make sure that Peter was okay after getting the news.  After our call the mission president asked Peter if he could give him a blessing.  He placed his hands on Peter's head and quoted the scripture "Be still and know that I am God".  What are the chances that of all scriptures he could quote he would chose that one?  As I was driving to work the other day I had a profound feeling, hard to express in words, but there was a sense of awe and power.  I guess if I had to put it in words it would be "Behold, the hand of God", or "Prepare to witness a miracle".

Crazy Hair!
JoLynne and I refer to the "dark thoughts", the ones that creep into our minds and demand center stage.  Thoughts filled with fear and doubt.  Lately they haven't had much time at center stage and we are grateful.
Vivian's pool party

In the meantime, my hair is crazier than ever and Vivian invited us to a great pool party last night.  Life is good!

Saturday, June 8, 2013

Dear Friends

JoLynne and I just returned from Mayo.  Unfortunately they didn't give us the news that we were hoping for.

The bad news is this, the cancer is back, probably three tumors, all in the original surgical bed but fairly large.  The surgeon felt like the situation was inoperable due to the number and size of the tumors and their proximity to vital structures.  The other bad news is that there are really only four mainline chemotheraputic drugs used for this type of cancer and they have used all of them on me and none have proven to be effective.  Radiation is less often used but we tried that as well and it was also ineffective.

The good news is that it hasn't spread to my lungs or brain.  In the oncologists words "I still consider you curable".  The Oncologist at Mayo has had some success with a few other drugs that are normally used for lung cancer or pancreatic cancer and he would like to start me on those.  Also, he is one of the few doctors in the country doing something called tumor gene mapping.  Essentially they take your tumor and analyze it's DNA looking for vulnerable areas that can be attacked.  The group doing the analysis is out of Harvard.  They are very successful at finding vulnerable areas but the number of drugs developed to attack those vulnerable areas is still quite small.  If we are lucky my tumor will present with one or more vulnerable areas that we have drugs designed for.  They will start that analysis this next week.  I'm not sure but I will probably start chemotherapy again next week as well.  I meet with my doctor here on Tuesday.

I guess the best news is that we still have faith that God can work a miracle in my case.  I have to admit, I was quite despondent at first but as the days have gone by I find hope pushing out fear.  I honestly don't know what God's plan is for me but I trust Him!  I hope that I am allowed to stay and be with JoLynne and my children for years to come and I still believe that is possible.  We went to the temple today with our kids.  Those same feelings came to both of us again.

We are going to fast as a family tomorrow.  If any of you would like to join us we would very much appreciate that.  Our prayers are that the new chemotherapy will be effective, that the genetic mapping will find a vulnerable area in the tumor that has a drug developed or that God works his miracle however He sees fit.  Ultimately His plan will unfold for me and we will follow in faith like we always have.

We love and appreciate each of you.  Thank you for you tender concern for me and for our family,


Monday, April 1, 2013

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!

Wednesday, March 13, 2013

Rad Grad

I'm sorry to not update this blog more frequently.  When I get feeling better I get too busy to sit still at a computer for very long.  Such has been the case.

End of treatment:  What a joy!
Radiation ended for me on Wednesday February 27th.  That was a glorious day. I have quite the "healthy glow" these days.  It was kind of a high priced tanning salon but it was worth it.   JoLynne had secretly arranged for all my children to gather at the radiation clinic with balloons for a party.  It was quite the surprise when I finished my appointment with my doctor and walked out the reception area to see such a gathering.  It was tearful and wonderful.  My family has been so supportive of me throughout this ordeal.  I don't know how I could have made it through without them.  JoLynne is so tender and caring.  I am constantly grateful for my wonderful wife.

The doctor warned me that the pain would continue to increase for at least a week after treatment.  I hoped that he was exaggerating but he wasn't.  The next week was pretty nasty.  It has been hard to hold onto my weight during these treatments.  Eating has been an ordeal.  Thankfully, as a dentist, I have access to some pretty powerful topical anesthetics.  Typically at mealtime I would simply numb my mouth and throat and that would make it possible to swallow.  Even so, I have lost about 25 pounds over the course of radiation.  I wish it was all fat but a lot of it was muscle.  It looks like I have chicken legs now.  All that will come back, of course, over time.  It has now been two weeks since radiation stopped and the pain has continued to diminish.  It still isn't really comfortable to eat but I don't need topical anesthetic to swallow anymore.  According to the doctor it will be 6-9 months before my sense of taste returns.  (I still have good taste in women, it's just my mouth that was affected).  My next scan will be the end of May.  The doctors are very hopeful.  Because my tumor was extremely fast growing, it should have been very sensitive to radiation.  Every cloud has a silver lining.

Up up and away
50's party attire
March 2nd was a great day.  That is the day that JoLynne turned 50.  If you ask her she will tell you that she is turning 25 for the second time.  The night before her birthday I informed her that we had an appointment at 6:00 am the next morning.  She was pretty dumbfounded.  I wouldn't tell her where we were going.  After a while she said, "Eric, I don't want to go swimming on my birthday!" (I often swim early in the morning).   I offered to teach her to flip turn but she still wasn't going for it.  Early the next morning we drove up to Heber and launched off in a hot air balloon over Heber valley while the sun came up.  It was amazing.  I guess we were up for about an hour.  Later in the day we planned a surprise party for her at the church.  One of my assistants suggested that we hold a 50's party for her to celebrate the event so that is what we did.  She had no clue.  After dinner I handed her a bunch of 50's clothes that I had bought on the internet and told her to get ready because we were going out.  She had a poodle skirt, matching socks, scarf etc.  She looked great.  My good friends had offered to let me borrow their 66 Mustang to drive up in.  It was amazing.  When we arrived at the church the parking lot was pretty full.  She said "Please tell me that all these cars aren't her for my birthday"  I just smiled.  The cultural hall was full of people that love JoLynne.  Our daughter had gathered pictures of JoLynne and posted them all around the walls from every year of her life.  Our kids and neighbors had put together all the decorations, refreshments, music etc.  We danced, drank root beer floats, did Hoola Hoopes and just had a great time.  All in all it was a great birthday.  Oh, and I bought her a little red something to drive around in.  At fifty you kind of have to have a midlife crisis of some sort.
A little red something

Elizabeth as "Queen Elizabeth"
On the following Sunday Peter and Spencer were awarded their Eagle rank in scouting.  They both worked hard and it was kind of cool that they could have it awarded at the same time.  We are proud of them.  Yesterday was "Images of greatness" for our daughter Elizabeth.  Each child was to choose a historical figure, learn all about them, write a paper and then dress up as them for the evening.  Elizabeth had chosen to learn about and portray Queen Elizabeth the first.  She and her mom went all out on her hair and her costume.  I loved watching Elizabeth prancing around the house after the program looking at her reflection in every mirror and other piece of glass in the house. Really they grow up too quickly.

One week from today our son leaves on his mission to Barcelona Spain.  For the last several months I have had the chance to have him work at my office.  Boy we are going to miss that boy.  Every morning he informs us exactly how many days and hours he has left before departing.  I think he will be a wonderful missionary.  He will be speaking in church this coming Sunday.  His visa has has not yet arrived so he will be spending time in the MTC here in Provo instead of Madrid.

Every day brings me something to be happy about.  As I was dancing with JoLynne during her party it struck me how close I came to leaving this life early.  It's hard to express how grateful I was to be standing on a dance floor holding her in my arms at that moment.  Life is truly beautiful.  I cherish each moment.

Saturday, February 9, 2013

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.

Monday, January 21, 2013

That "healthy glow"

Kind of "Sci Fi" don't you think?
The tanning salon
I have now finished one week of radiation therapy.  One down, five and a half to go.  It's kind of like a really high priced tanning salon.  You should see the healthy glow that I am sporting on my right side.  I think that I mentioned before that it was decided by the tumor board to give chemotherapy along with the radiation.  So, Monday morning I spent 6 hours getting chemotherapy and then a half hour getting radiation.  The chemotherapy agent chosen this time is cysplatin, the same one I had the first time around.  I am told that the dosage is less this time and they aren't giving me adriamycin at the same time so hopefully it will be less damaging.  Still, by Friday I wasn't feeling too great.  Saturday was worse and I went to bed early with a bowl by my side.  Sunday I seemed to feel better which was a blessing since I was supposed to teach at ward conference.  All in all, not fun but not as bad as last time.  The radiation makes me sleepy.  They say that will get worse as it goes along.  I'm also told that the oral side effects will worsen after the second week.  I guess it will cause mouth sores, trouble swallowing and sinus problems.  Oh well.
Life is great

Other than cancer drama, life is great.  Our little grand daughter just gets cuter every day.  She can now sit up on her own quite well for a little while.  She's also getting pretty good with her hands and moving things around.  It's great trying to get her to smile and giggle.  Peter is getting ready to go to the temple for the first time.  He had his final interview with the Stake President yesterday.  The Stake President told him "This is a great day for your parents".  Peter replied, "It's a great day for me!" and he is right.  He is counting down the days until he leaves for Barcelona on his mission.  Jarom continues to date a very nice young lady.  He brought her by for dinner yesterday and the whole family agrees that she is lovely.  Seth was just asked to come for another interview for medical school in Chicago.  The school is even paying his way this time, so all the better.  JoLynne is getting around better all the time on her healing legs.  It seems like her endurance is better and her pain is less.  Nobody has stolen our identity for weeks now and no pets have died so we are feeling pretty good about life.

People frequently tell me that we are in their prayers.  I just want you to know that we take that seriously and we are very grateful for your faith in our behalf.  I don't know how decisions are made in heaven but it can't hurt to have a lot of people pleading for you.  Thank you.

Tuesday, January 1, 2013

"There and back again"

We have recently returned from Minnesota, our Disney cruise and some wonderful family time in Florida.  It's was good to go but it's nice to be home!

Balmy Minnesota attire
The part of our the trip involving Minnesota was kind of a "necessary evil".  As you probably know if you follow this blog portions of my jaw cancer had returned and needed to be removed surgically.  The doctors decided to try and remove the tumors through my right nostril.  During surgery they found that they needed better access so an incision was made under my upper lip allowing the surgeon to access and remove the rest through my right sinus.  Not a fun surgery but certainly not as bad as last time when they peeled off the whole right side of my face.

My operation was on Tuesday and we were scheduled to fly to Florida on Friday to go on a cruise with our family.  We were probably a little crazy to plan a trip so soon after my surgery but it was a leap of faith.  In retrospect it all turned out well.  All of this is going to me make me more compassionate to my patients in the future when I treat them.  It turns out that getting your mouth cut isn't that comfortable.  Nothing engenders compassion better than personal experience.  After the surgery I was somewhat swollen for the next few weeks and I had to be careful when I was eating so that food wouldn't push on the surgical site but overall the recovery wasn't too bad.   Gratefully eating isn't that big of a part of taking a cruise. :)

Beach at St. Thomas
So we arrived in Florida and met our children at the airport.   We had  chosen to go on a Disney cruise since they were the only one we could find that would allow a 3 months old baby on board.  This was our first cruise ever so we have nothing to compare against but it was wonderful.  There was fun stuff to do every day, way too much food,  beautiful sunsets and lots of time where you didn't have to do anything.  I've decided that it is way nicer to recover from surgery on a cruise ship than in a hospital room and it costs a lot less.

Drowning in a life jacket
Our cruise left from Florida and headed to St. Thomas.  With all our trips to Mexico we are somewhat used to beaches in December so laying on the beach seemed just right for Christmas.  Taking our grand daughter swimming in the ocean for the first time was simply a delight.  From there we went to Puerto Rico.  The day we docked was rainy but we didn't care.  We put on Disney ponchos and trudged all around San Juan.  We were looking for "old town" and at one point we asked a policeman for directions.  He just looked at us and said, "It's all old town".  Anyway, we had a great day and the rain cleared up after a while as well.  From there we went to an island owned by Disney and spent another day on the beach.  It rained that day as well but we still had a great time.  The rain just helped to clear everyone off the beach and leave it all for us.

Epcot at night
After seven days at sea we returned back to Florida where JoLynne had rented a home for us near Disney World.  We couldn't check into the house until the afternoon so we went for a ride in the everglades on airboats.  Our cute little grand daughter was simply "drowning" in the life jacket but it worked, sort of.  it was amazing to skim across the swamps and see birds and alligators everywhere you looked.  The home that JoLynne rented was just perfect for the twelve of us.  I don't think that I mentioned that we had every one of our children with us and our son in law and grand daughter.  We managed a "full house".  Days were spent at Disney World and evenings spent playing games and watching movies.  It was wonderful.  The park was full but JoLynne, the master planner, seemed to get us onto the rides with almost no waiting for the most part.  She is amazing.
Disney at Christmas.
Apparently we weren't the only ones with this idea

Finally on Saturday it was time to return to real life.  It's hard to go from 70 degrees and sun to snow and 20 degrees but it had to be done.  We came home to shoveled driveways thanks to our wonderful neighbors and a nice warm home.  So nice to sleep in our own bed again.  And, even with all the fancy food of a cruise ship somehow what you make in your own kitchen just tastes better.

Holding my nephew,
Finally someone with my same hairstyle
Well, on this Wednesday we meet with the radiation oncologist here to start making plans for my radiation. We have high hopes that it will not be so devastating as the chemotherapy.  We are especially hopeful that with the radiation and my last surgery we can finally defeat this cancer once and for all.  I wouldn't wish cancer on anyone but this last year has taught me things that I don't know that I could have learned the same in any other way.  I have a CTR ring that I wear.  I know that CTR stands for "Choose the Right" but  I wear it because for me it also stands for "Choose to Remember".  I hope that long after I am cured I can always remember what this year has taught me.

Among other things cancer has taught me:

  • Trust in the Lord and He won't disappoint you.  He may not take away your trials but He will walk with you through them.  Having Him by my side has meant everything to me.
  • The blessing of family in times of trial.  I have felt help from people from the other side of the veil, especially my mother.  My children have lifted me (literally at times) when I couldn't lift myself.  I can't even express what JoLynne has meant to me.  I have come to look upon her as my guardian angel.  Words can't express what I feel.  
  • The true meaning of charity.  I have seen such amazing kindness and caring by those around me
  • Why the Holy Ghost is called the "comforter" and what that really means.
  • The power of the Temple in bringing peace and helping us to find answers to our questions.
  • The power of faith, especially on the part of people who care about you and priesthood blessings to bring about miracles.
  • Sunset over Disney
  • What really matter in life.  Things that seemed so important to me before seem less so now.  I appreciate a sunrise more, looking at my grand daughter or holding her while she falls asleep are pretty high on my list now.
We are so grateful for each day and for friends and family who love and support us.  Thank you!