Wednesday, October 29, 2014

Another blog

Isn't language interesting.  Twenty years ago if I told someone that I was going to blog someone would have probably handed me a bucket to catch it in.  Now it means something completely different, or at least I hope so.  Hopefully what I write is more than verbal vomit.

This last Monday I had blood collected for the clinical trial in Texas.  I came into the doctors office holding this fairly large box full of empty vials and handed it to one of my sweet nurses.  She took one look and said, "Wow, that is a lot of blood."  About two thirds of the way through she couldn't get any more to come.  I wondered if I had run out but she managed to pull a little more and finish the job.  I'm still here blogging so I guess that something is still circulating in there.

Kids in Oregon after we abandoned them
Monday afternoon I had a "PEG tube" put into my stomach.  I have really been struggling to swallow. I just can't direct traffic in the back of my throat.  Sometimes the food goes down, sometimes it gets stuck, sometimes it comes out my nose, sometimes it goes into my lungs.  They think that is the reason I got pneumonia this last week.  Sometimes you just have to laugh.  A few days ago I had just eaten dinner and had run over to a friends to take them some tomatoes.  As I was getting out of the car I sneezed and out popped a carrot, not a small one.  I just looked at that and thought "Oh brother".  Anyway, with this tube directly into my stomach I can still keep nourished and not have carrots popping out of my nose.

It was an emotional day for me.  I remember looking at that box as we sent it off to Texas via FedEx thinking, "Okay God, now you have my blood, turn it into a miracle."  It seemed so final.  Then getting the PEG tube seemed like another admission to my declining health.  Arghh, I hate that.  I just kept repeating in my mind, "prepare for a miracle Eric"  We are full of hope and we trust God.  Sometimes I just think "I believe, help thou my unbelief."  It's hard to have perfect faith all of the time.

My angel wife and our granddaughter
I talked to the lead scientist today from Baylor.  She is very nice.  It sounds like treatment will probably begin January 5th.  It will take that long to engineer the cells.   Probably we will need to stay in Texas for about 6 weeks.  This is a phase one trial meaning they are testing safe doses.  She told me that it appears that the initial dose that they had thought to start with appears safe so she is going to jump me up to the next dosing group right from the start.  That is good news to me.  She also said that my blood shows that I am positive for another marker, HER2.  That is also good news.  If the GD2 doesn't work they can try the HER2 instead.  She believes a trial against osteosarcoma using HER2 will begin within a few months.

In the meantime, I haven't had chemotherapy for almost three weeks now and boy do I feel good.  I just love how I feel when I'm not being poisoned.  Chemo will begin again on Friday so I will try to enjoy feeling human again even if it is only for a few days.
If joy had a face, this would be it.

This last week we had most of our children with us.  Seth had flown out to go to his cousins ring ceremony.  Shanelle, Mike and Vivian came to bring our car back from Oregon.  That was a clever way of us to get them to come.  Sunday we took up the entire row with our family.  That made me happy.  It was like the good old days.  They have all gone home now but it was nice while it lasted.

Saturday, October 18, 2014

"There and back again"

I should take a few minutes and detail what's going on around here.

Well,  on Sunday we flew to Houston Texas to meet with doctors and scientists involved in clinical trials.  There are several studies that I am interested in at MD Anderson cancer center and one being done, literally across the street at Methodist hospital under the umbrella of Baylor university.  It was a fast trip.  We landed at around midnight on Sunday and had appointments on and off Monday, and flew home Tuesday afternoon.

MD Anderson is an amazing hospital.  They are dedicated to finally finding a cure to cancer and are committing enormous amounts of money to just that.  I read in one of their press releases that they felt that we should spend as least as much to cure cancer as we did on the moon program if we want to find a cure.  Anyway, they are hard at it.  We got checked in there and in the meantime the lead scientist from Methodist arranged to run over and meet us at a coffee shop in the hospital.  Her name is Lisa Wang and a super nice person.  Her study is one that was suggested to us by my brother in law Troy and in all our research we have never crossed this one off the list.

The concept is pretty cool.  Basically it is this.  The body has a system to fight cancer, unfortunately it doesn't always work well enough.  One of the body's defense forces are called T-cells, sometimes called T killer cells.  Basically they roam the body looking for anything that doesn't look right.  If they find something messed up, like cancer or other things, they hook on to whatever it is and destroy it.  The problem with cancer is that sometimes cancer has developed ways to hide from the T-cells or the T cells get tired before they finish the job.

In this study they take T-cells from your own body and genetically enhance them.  They give them special targeting DNA that makes them just look for one thing, in this case my cancer.  It turns out that my cancer has a unique marker in the cell membranes called GD2 which isn't really found on any cell in the rest of my body.  So, instead of looking for anything that is amiss, these genetically modified cells only look for osteosarcoma.  Secondly they put other DNA in the T-cells that makes them live longer and get tired more slowly.  Once they have these super T-cells they begin to clone them outside of your body until they have a whole host of them then they re-inject them into your body.   Anyway, it is a phase I trial, meaning early research, no guarantees, but the concept has worked well in neuroblastoma patients, who also have GD2 and a similar concept has been successful in treating adult leukemia, it also works really good in mice.  So, they were excited to have me join their study.  I am a perfect match.  The study plans to include 26 people.  So far they have treated one.  Almost no side effect to treatment because it is so narrowly targeted.

We then met with scientist/doctors at MD Anderson.  They were also very nice.    They had a few studies there that might be applicable to me.  Interestingly enough of the ones I was aware of two had been put on hold due to supplier problems and one wouldn't open until November, maybe.  I asked them if they had heard of this GD2 study and they knew of the concept but didn't know that one was going on across the street.  Both doctors said, "This is the best study for you to do.  You should use ours as a back-up plan if this doesn't work"

I guess I had hoped for  a pillar of light or at least an angel directing traffic to be visible.  I left wondering "Is that's God's way of showing us the way, by simply making the other studies unavailable or having other doctors push us back the other way?"   Maybe there was an angel directing traffic but he seemed to be dressed in undercover clothing.
Tuesday we went to the temple in Houston.  It was beautiful, as always.  We had a good session, no burning bush but a sweet peace that we always feel in the temple.  Wednesday our son Jarom sends me a text with an article link just out that day.  The title is "Lab made blood cells hunt cancer, leading to remissions" and it is all about the research on T-cells that I just described. 
It was hard to read that article, my eyes seemed to have a forecast of "frequent rain showers".  Again, why that article right then?  Maybe God nudging us in a certain direction.

Here is our honest belief:

  • God can heal me whenever He wants and however He wants
  • My healing may happen at the hands of men, guided by God
  • If others can be blessed by the way in which I am healed, then so much the better.

Shanelle and Grandpa
Cute Vivian at the beach
Adam, Vivian and Elizabeth
Well, Wednesday was fall break and we decided to drive to Oregon to see our Daughter Shanelle, and Mike and Vivian.  We took off late Wednesday and arrived just after dinner on Thursday.  Honestly I didn't feel very well much of the trip but it was so nice to see Shanelle and her family.  Wow did that make me happy.  We went to bed Thursday night at Shanelle's house and I had a bad night.  Lots of pain, fever, chills and yuck.  Poor JoLynne in the middle of the night rubbing my feet and trying to help me stop shaking.  We finally got out a thermometer and I had a temperature of 102.3.  We went down to Mike's office in the morning.  He found I had an ear infection and was worried about what else it might be so he called my doctors in Utah.  They were worried I might have sepsis again and said I needed to get home ASAP.  We booked a flight out of Eugene and spent all last night in the ER.  The blood cultures are not back yet but what they do know is that I have pneumonia and an ear infection.  And that there is no  cancer in my throat or tongue.  We were worried about that due to my trouble speaking and swallowing.  Mike had given me a strong antibiotic in Oregon and maybe it is a coincidence but maybe not, within 24 hours my speech is quite a bit better.  Hopefully that is infection related as well.

We still have one study at UCLA we are looking at.  We should know about that within the week.  It is using T-cells as well.  Either study would require at least 8 weeks to get started.  That is how long it will take to clone the cells.  As always we appreciate your faith and prayers.

Saturday, October 11, 2014

My life

"I walk up stairs formed of faith
I look out windows built of hope
I see images shining back at me of an
imperfect, but beautiful life as it is,
and visions of a wonderful life yet to come"

Eric Vogel
October 2014

(Okay, the stairs squeak a little
and the windows are sometimes a little dirty
but it's good enough for me)

Saturday, October 4, 2014

I love my profession

Someone once said, "Choose a job that you love and you will never work a day of your life".  I like that saying.  Now I know that every job has it's moments, mine does, but truly I love what I do.  I have thought about what I love so much and decided that the main thing for me are the wonderful people that I treat as patients.  They feel more like friends to me, not just patients.  It has always felt that way to me but even more so since my health challenges.  When I was first diagnosed the first people we told were our children, then our siblings and parents.  Then we had to make a choice, would we let others know or try to keep it to ourselves.  We made the decision to tell others, my patients and members of my church.  One reason was selfish, I knew that some would pray in my behalf and I wanted to wear our God's ears with petitions.  But the second was that most of these people felt like family to me.  How could I not tell them?  I knew that I would loose some patients who would go looking for a "healthier dentist" but I chose to tell anyway.

For these last three years I have been so grateful for the kindness these people have shown me and the prayers they have offered for me.  I knew how much I loved my patients and church members, I now know better how much they love me in return.  From time to time I have doctors that wanted me to see a mental therapist or join a support group to help me deal with my cancer.  I simply tell them that my therapists and my support group are my family and my friends, many of which are in my practice and my ward and stake.

Okay, having said all that let me tell you something that lifted my heart the other day.  I have a patient and dear friend who I have treated for many years.  She comes from the most wonderful family.  I love all of them.  This particular patient was diagnosed with a rare type of cancer about 17 years ago and told it was incurable.  They estimated she had 18 months.  She underwent treatment anyway even though she new it wouldn't cure it.  Part of her cancer was in the back side of her throat and I could see it.  I took careful photos of it every time she came and would share those with her physicians for their records. I can usually get way better images than they can.  As the years went on we could see it growing but there was little we could do.  These last three years my heart has come to understand her's even better with my own health challenges.  This last week she came in.  She told me that about 6 months ago they had surgically removed some of tumor so that she could swallow better but fully expected it to grow back.  Then in November a new drug was discovered for her cancer. She started taking it within days of it's approval.  Last time I saw her she had a huge tumor in the back right of her throat and another pretty big one in the left side of her throat.  Now when I look, the right side had nothing and the left side had shrunk to almost nothing..  She said "God just needed to keep me alive until a cure could be discovered"  I can't describe how those words came home to me.  It perfectly describes how I feel and what I hope for.

The other day I was visiting with a reconstructive surgeon.  At some point, when my cancer is cured, I am going to have to reconstruct the right side of my face.  The surgeon was very nice and said that what I needed was complex but possible.  He then told me, "You know, you may not survive this cancer right?"  Well, I know know as well as anyone what medicine can do for my cancer right now.  I have read hundreds and hundreds of clinical studies related to my cancer and they all start out with "Since there is no known treatment for recurrent osteosarcoma..." then they proceed to talk about why their experiment might further our knowledge about this untreatable disease.  I looked at this surgeon and said.  "You know, I am barely old enough to rememberer Polio.  It used to be mostly incurable.  Then God chose to reveal a cure.  How many polio patients have you seen this week?"  He got a big smile and said, "None... I like the way you think"

So, life is good.  I have had a wonderful year with two sons getting married, another son leaving on a mission, and hundreds of things that have brought be great joy.  I appreciate every single day.  The hard days just make me appreciate the good ones more.  I love walking, holding my wife's hand and I am looking forward to years and years of that to come.