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

St. Paul Temple

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

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

YUMM

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

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.

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.