TEARS OF GRATITUDE

Is it just me or has this been a really long week?…

As mentioned before, Monday I had my scans, Wednesday we received the report from Utah Valley radiologists stating their belief that I had metastatic cancer in my skull and soft tissue.  We sent off images to Mayo and waited and waited.  Finally I went to Utah Valley to see if they had really sent the images.  They said that they had but they were sent via normal mail so, not expected in Minnesota before Monday.  So we waited, and worried and waited and worried.

Inside my head is this battle.  A battle with faith and trust on one side and fear and despair on the other side.  I'm trying to imagine what would be left of me if they operated on me and removed the base of my skull.  I'm wondering if I have enough strength left in me to go through something like that.  I'm wondering if JoLynne will be able to survive on what we have saved up.  I'm trying to figure out if it is worth moving to some other part of the world and trust my life to some experimental drug study that has not yet saved anyone.  

And yet on the other hand I hear my son Peter write in his later home, "Last time, before you told me, I just felt like something horrible was going on. This time I just feel kind of peaceful! It will all be alright, but we have to do our part! God will work another miracle for you if we have the faith and do all that we can!"  And I think of the many blessings that I have been given.  I think of JoLynne going to the temple and receiving the assurance of "by grace you will be saved after all that you can do"

So I fight back and forth, an emotional roller coaster.  By Wednesday we still had no word.  My dear friend Deb, who comes to my office has been so sweet.  She helps us with our supplies at my office.  She is a cancer survivor.  She stopped to see how I was doing.  By then I was exhausted from all of the emotions.  I told her "I've simply decided that I can't worry my head off over this any more or I won't have a head anymore.  That would solve the cancer thing though."

Late Wednesday I had a text from Dr. Foote, our dear friend and radiation oncologist at Mayo stating that he had just gotten the images and was sending them in to be read.  He was leaving for San Diego but promised that he would tell me as soon as he knew something.

At 1:45 am I got up and thought "who knows maybe he sent something."  Sure enough, there was an email from Dr. Foote.  Basically his email states that the radiologist can't see anything suggesting recurrent cancer and he  suggested another scan in 3 months.  He then forwarded the report from the radiologist.  It was completely different from what was said by the radiologists here.  So I sat on the couch crying tears of gratitude.  By God's grace my life has been spared again.  I thought about waking JoLynne but decided that then she would just sit up all night crying too.  So I waited until 6:00 am to tell her. Then we had a good cry together.

I had a hard time falling asleep after my 1:45 email.  When I finally did fall asleep I dreamt that JoLynne had told me "Eric, if you are going to stick around then we are going to have fresh strawberries every day."  She had me rip up our kitchen floor and plant strawberries all over in the kitchen.  I know, weird dream.

Well, back at the start of this whole thing we had a blessing stating that I would live to see grandchildren and great grandchildren.  So, now I'm thinking about a porch with rockers.  Got to have somewhere to sit while we are watching all the kids playing on the lawn.

By the way, thank you of for all the prayers on my behalf.  I believe in the power of prayers!  Thank you from the bottom of my heart.

Kind of worried….

Well, another PET/CT scan is back.  I am learning to hate these things.  So far we have the radiologist report from Utah Valley but not from Mayo yet.  I expect to hear back from them on Monday or Tuesday.

To be honest, the results were not what we were hoping for.  First I should explain what a PET scan is. Basically they have you fast then you come in and they inject you with radioactive glucose and then have you drink something that I think is radioactive as well.  Then you lay in a dim room for a while while your body uptakes the radioactive glucose then you lay on a table for about 2 hours while these scanners look to see where the glucose went.   The idea is that cancer is a glucose pig and so more uptake is more likely to be cancer.

Well, the PET scan showed increased uptake along my right skull base compared to last time.  This might mean that I have cancer in the skull base.  That was the conclusion that the radiologists came to.  In their words, "Likely metastatic disease around the skull base and soft tissue on right side"  Having said that, the CT scan didn't show any changes.  I can personally think of alternate explanations for increased glucose uptake.

We met with our oncologist yesterday, Dr. Wallentine.  He is a fine man and I have a lot of respect for him.  We are all worried, of course, but he wasn't anxious to jump to conclusions yet.  He felt the same as we do, basically, let's wait and see what they think at Mayo before we jump to conclusions.

So, here we sit, worried and prayerful that other doctors will read the images differently.  I know that tomorrow is fast Sunday for most of you.  I would hope that you might mention my name to Heavenly Father while you are fasting.  We are grateful for the prayers and faith of anyone who feels so inclined.

I wish we had better news.

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.

"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.

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.

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.

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