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!

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,

Eric

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!

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.

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.

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.

"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!