Time shares

Well. I haven't blogged here for a long time. I have been too busy being well to sit down and write much. It has been good to feel good again

Unfortunately this last week I have taken another turn in the road. Monday I had an unpleasant meeting at work and came home with a splitting headache.  I just figured it was from the meeting. Tuesday it wasn't much better. My head hurt and I just didn't feel good.  At one point I laid down in my office on the floor and closed my eyes for a few minutes.  Right then my receptionist, Lori, came in and gasped. I think she thought I had fainted or died and fallen to the floor. At least that was a bright moment

By noon I could see I wasn't well enough to work so I went home and had patients changed. I still felt pretty rotten so we got an appointment with an ENT friend of mine. He cultured my sinuses, recommended an oral antibiotic and took a tissue biopsy of an area of my mouth that looks weird

I came home still feeling pretty rotten. Basically every time I sat down I fell asleep. I tried taking the medicine but everything I swallowed I threw up again. Tuesday in the middle of the night I started shaking so bad I thought my teeth would fall out. I couldn't stop. JoLynne woke the boys and was going to have them carry me to the car and take me to the hospital. I threw up again and the shaking seemed to subside so we stayed home

Wednesday I called my oncologist and he suggested coming to the clinic where they could do the antibiotics and fluids IV.  That sounded good so we went. They did some blood work and rehydrated me and I felt a bit better. I was still sleeping all the time. My temperature went up to 104 so that had us worried a bit. Thursday we went for fluids again and more antibiotics. I was finally starting to feel somewhat better. My neck was really sore and I was weak but walking. Friday they called and told me that blood work was back and I had two positive cultures for staph infection in the blood and that I needed to be in the hospital. Also the ENT called and said that the tissue sampled had areas of comcern for cancer.

Home sweet home

We checked in Friday. I told JoLynne as we were pullng up that if I had known how much time I was going to spend here I would have looked into a time share option. She thought that there were better places for a time share

The doctors were very thorough. The infection control doctor seemed especially knowledgable.  I'm glad that they found this. Unchecked it could have gone bad really fast. As it is I will be here on really powerful antibiotics until Monday. If I am responding well then I will go home with an IV pump and continue for another two weeks. They were worried it had damaged my heart. If that were true I would be on the sntibiotics for months IV instead of weeks. The tests showed my heart was fine

We are still waiting for Mayo to read the biopsy slides. I can't worry about that now. It will be whatever it is.  I asked my doctor this morning, dr Wallentine, if he ever just thought "will this guy either get better or die once and for all". He sweetly said "I only ever think the first one Eric"

So, here I sit in this overpriced hotel working on getting better.  We have a wedding the end of this week a granddaughter coming to be tended, bike rides and sandbox time and somewhere in there I need to build a rocket ship (Vivian's request). I had better hurry and get better

Preliminary design on "the rocket"

Survivor

On Saturday I was asked to be the keynote speaker at an oral cancer awareness event.  You should probably know that April is oral cancer awareness month.  It was an honor to be asked to speak.  Most of those in attendance were dental students and their families.  I hope that I impressed upon them the importance of carefully screening their patients for oral cancer and testing anything that looks suspicious if it doesn't resolve within two weeks.  In my case early detection by my wife and a wonderful oral surgeon who decided to take a CT scan instead of wait and watch probably saved my life.  I will always be grateful.

Facts that you may not know.  Almost all forms of cancer have improved in their survival rates over the past 30 years, but not oral cancer.  Currently the survival rate for oral cancer remains at about 60%, the same as it was 30 years ago.

When oral cancer is detected early it has a 90% survival rate

When oral cancer is detected late it has a 20% survival rate.

Oral cancer rates are climbing at an alarming rate.  This is primarily due to the HPV virus, (human papilloma virus.)  These rates are climbing especially among young people and are directly linked to sexual behaviors.

As dentists we can do a better job at finding cancers early and testing all suspicious lesions.

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.