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,