The other guy

One week from today I will have my reconstruction.  For the record, I plan on sleeping through the whole event.

Yesterday we went to the temple  As we entered the locker this sweet temple worker looked at my bandage and said, "What did the other guy look like?"  Usually I can never think of clever things to say on the spot but I guess inspiration comes more easily in the temple.  I told him "The other guy was a surgeon.  Watch out for them.  They knock you out and then they beat you up"  We both had a good laugh.

Honestly I will be so grateful to have this rebuilt.  Talking to the surgeon and my infectious disease doctor here they are a little concerned about a psuedomonas infection that I have on the old, broken titanium chain.  This type of bacteria adheres to metal and is very hard to get rid of while metal is present.  So, they may do the surgery in stages.  First remove the metal and all the dead and damaged tissue and repair the holes and then wait a few months for the psuedomonuas to resolve before rebuilding the jaw.  We will know more on Wednesday when we talk to Dr. Marx.  I plan on telling him, "Look, I plan on living to an ripe old age, so start with that as a given.  Then treat me the same way you would if I was your brother."

I was honored at the UDA (Utah dental association) meeting this morning.   Inducted into the international college of dentists actually.  Normally this has to be done at a national ADA meeting but they made an exception for me due to my health.  They tell me that this is the first time that they have ever allowed an exception.  It was very nice to be there with my sweetheart JoLynne by my side.  Some of the finest dentists that I know belong to this group.  I was grateful to be invited.

I love the Temple!

Thursday night, (last night) we went to the temple.  It is a bit of drive but so worth it.  Every time I go something wonderful happens.  I guess I shouldn't be surprised given where it is that I am going.

The house of the Lord in Houston

So, last night we went.  We were early for the eight o'clock session so I stopped in the bathroom.  In there was this older black man fiddling with his suspenders.  He said something to me about his suspender, which honestly I didn't understand, then he asked me why I had a bandage on the side of my face.  I told him I was battling cancer.  At this point he left his suspenders, threw his arms around me and hugging me in this big bear hug said, "God is going to bless you my dear brother.  He will do it!"  Then he walked out of the bathroom
with his suspenders still only half fixed.

Now, I don't know what an angel might look like, but last night my angel was a beautiful black man in the bathroom with suspender problems.

T-cells...attack!!!!

Well, I should have posted sooner.  I'm sorry.

After multiple flight delays out of Salt Lake we finally arrived here in Houston.  I think we fell in bed at 4:30 am.  Ughh.  Monday I had a physical and consultations with the doctors.  They were amazingly nice.  There were two doctors, Dr. Wang and Dr. Gottschalk who spent over an hour with us explaining the procedure, what the side effects might be, what the hoped for outcome might be, what other studies were beginning that might be applicable to me.  They were so good to us.  I can't think of the last time a doctor spent an hour talking with me.  Wow!

I passed the physical with no problems and they were thrilled to have me here to participate in their trial.  I am the second patient to qualify for the study.  We didn't really asked how patient #1 is faring, it isn't relevant frankly.  Anyway, they told us to return on Tuesday at 9:00 am to start the infusion.

Monday after we left our consults I had a call from a Dr. Marx in Miami.  He is a very famous oral surgeon.  I had sent him an email with pictures of my wound and asked if he could help me.  Reconstructing my face is no small matter.  We have talked to multiple doctors in Utah and they all tell me how incredibly complex my reconstruction will be.  Anyway, he called and talked to me for over 30 minutes.  He said that treating advanced osteoradionecrosis (that is what I have, severe radiation burns that have destroyed my jaw and my skin on that side) is what he does for a living.  He felt that I was very treatable and talked at length about how he would do it.  We have an appointment in Miami on January 27th to meet with him.  After we got off the phone JoLynne and I just sat in the car and wept.  Just before this started JoLynne had an impression.  "Sit down, buckle up and prepare for quite a ride"  She felt like long prayed for miracles were about to begin.

Tuesday we showed up not knowing really what to expect.  Usually my chemotherapy infusions take all day.  So, there were three doctors and about that many nurses there to watch or help.  Finally they showed up with this really little syringe.  It had maybe 2 cc of golden fluid, less than 1/2 teaspoon.  There was lots of paper signing and witnessing etc.  Then the infusion.  I think it took like one minute.  JoLynne asked later how so little fluid was going to be enough to do the job.  The doctors told us "If this goes as planned those little T-cells will seek out your tumor and when they find it they will begin to replicate themselves like crazy until there are enough to do the job"

With immune therapy they hope to boost your immune response.  In a few cases it goes overboard and initiates something called a cytokine storm.  Basically your immune system goes crazy and you die.  So, they were watching me really close.  I had my own nurse for the next four hours, she basically never left the room.  When they genetically engineered these cells they built in a biological cut off switch  into the genes.  If everything is going wrong they can give you a drug that turns off all the infused cells.  The doctor told us that the cut off switch was embroiled in a patent dispute and that technically they couldn't use it because of the court battle.  But, he said, "I have the drug here in the hospital and if you start going downhill I will use it and deal with the legal complications later."

Well, with all that said, I had no ill side effects.  Except that I was sleepy but I think that was from not sleeping enough.

Blurry Houston Temple

Wednesday I felt great and ran a mile on the treadmill and lifted weights and went to the temple that night.  Today I felt great too.  I ran another mile on the elliptical and lifted weights again.  My face is hurting a bit more.  I don't know why but they did tell me to expect the tumors to swell when the T-cells attacked them.  Perhaps that is the reason.

Last night at the temple was so good.  I am pretty emotional these days.  Last night was just such a good session.  I spent quite a bit of time crying in the celestial room after.  I just had this overwhelming feeling that God loves me and that the priesthood blessings given to me and the miracles we have prayed for these last three years are about to be fulfilled.  I am so grateful for a loving Heavenly Father.

Well, here we sit, praying for T-cells.  Who would have thought that would ever be the center of my prayers but so it is.

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 new plan of attack

Well, it has been a busy week.  I feel like I have been running from one appointment to another.  Yesterday we returned home from Mayo with a new plan of attack to kill this cancer once and for all.  Mostly the news was very upbeat.

We flew to Minnesota on Sunday and started our consultations early Monday morning.  We met with various doctors until Tuesday evening.  After much discussion this is the tentative plan.  I am to return home and have two rounds of chemotherapy here in Provo to try and shrink the tumor.  Basically a round includes three days of chemotherapy, about 5 hours a day followed by 18 days of recovery.  They will be using a different chemical combination this time, Ifosfamide and Etoposide.  Along with several other support drugs.  These drugs are supposed to be less damaging than the last ones that I was given.

If the tumor  shrinks substantially in 6 weeks they may continue on with chemo for one or two more rounds.  If it doesn't shrink or grows then I will be off to surgery.  Everyone believes that the two tumors that they found are regrowth of the original tumor. Our doctor said today, "You can fit a million cancer cells on the head of pin", in other words, it's easy to miss something in surgery and not even know you missed it.  The new surgery will be much simpler.  They intend to take out the top tumor through my nose and the lower tumor through my mouth.  It will be outpatient surgery!

After I have healed for about 4 weeks they intend to start radiation.  For that part I will need to move to Minnesota for 6 or 7 weeks for radiation every day, five days a week.  The doctors felt strongly that the radiation should be done at Mayo.  The radiation oncologist is also the Stake President and a very nice person.  He said that because the tumors are small the radiation beam will be very small and have very little effect on adjacent structures.  Just a good sunburn on my right cheek.  I could do that in Mexico for free.  I should  have mentioned that to him.  I can't say that I am too excited about being in Minnesota for the winter with my newly bald head.  Oh well, I have lots of hats.

After radiation I may have two more rounds of chemo or perhaps I will just be done.  It kind of depends on how effective the first rounds of chemotherapy appear to be.  The only other piece of depressing news came from my blood test.  The numbers have come up but not really enough to call them normal.  They talked about possible damage to my bone marrow from the first chemotherapy.  Hmmm... I would offer to eat more liver but then I would have bad blood and an upset stomach.

So after hearing everything we were trying to decide if this was the right thing to do.  JoLynne and I were out walking along the river talking about our options.  Generally we felt good about it but still some lingering doubts.  It was a beautiful evening and the sunset was beautiful.  I was trying to get a picture but there was too much in the way.  Finally I found a place to snap a picture.  After taking it both JoLynne and I realized that the rays of sun all focused right on the building where my radiation and surgery would be performed.  Maybe it was coincidence but it gave us both goose bumps.  We think we are doing the right thing.

Tuesday evening we stopped at the temple in St. Paul.  Again a beautiful sunset but this time the sun's rays were pointing to the Minnesota temple.  I really felt like this was God's way of telling us that in these two places we would find the answers to our prayers.

Today we went to set up the chemotherapy appointments with my doctor.  They drew blood again and by some miracle my blood levels have now returned to normal.  It feels like God keeps clearing obstacles out of our way.



Sometimes when I think about this whole adventure I wonder why things are happening the way that they do.  I don't really know the answers but this is what it seems to me.  It feels like this whole cancer thing is like a big brain teaser puzzle.  The kind where you have to move each piece in just the right way and the right time to solve the puzzle.  Of course God could just heal me but instead he is managing my disease with the resources at hand, orchestrating events.  For example, if they had a positive biopsy the first time they would have started me with chemotherapy instead of surgery.  We now know that standard chemo didn't work against this cancer and it would have grown and probably made the tumor inoperable.  If they had done radiation the first time it would have been a large area.  The result would have been much greater damage to my other structures.  Now the tumors are small and the radiated area will be small as well.

Really, all I know is that God is in charge and that I am going to get better.  It just takes patience.  In the meantime, thank you for your prayers.   Please pray for my family.  I sometimes think it would be just as hard to watch someone you you love go through this as it would be to go through it yourself.

This Star patient is ready to come home.

Well, I have been unusually quiet for some time now.  Not because I didn't have anything to say but rather because the internet was broken at the house where we are staying and I am simply not patient enough to post a blog using my phone.

My healing is progressing well.  Sometimes those days right after surgery just seem like a dream.  I am grateful for what they were able to do but I don't really like hanging out in hospitals very much.  The last time I spent a night in the hospital as a patient was December 24, 1960.  They wouldn't let me out then because I was in the newborn nursery.  Oh how the great have fallen!

We have been fortunate to have a lovely home to stay in as I regain my strength. (thanks to JoLynne). Shanelle and Mike were able to be at the house for a couple of days, then they went home to take care of our other little cutie pies. (Peter and Spencer are still cutie pies, albeit, not so little any more!)  Seth was able to stay until Thursday morning when his flight left for him to go back to China.  Wednesday we took the opportunity to drive up to the temple and do a session with Seth.  This was amazing and wonderful and it was a blessing that I felt good enough to attend a session.  Even though the whole surgery thing  hasn't been pleasant, it has been a very spiritual few weeks for JoLynne and I, and the temple was a wonderful place to be.  We didn't have our own temple clothes but they had some to lend.  I felt bad that my right leg wound was still weeping enough that when I finished the session I looked down to see the right leg of my pants somewhat bloodied.   The ladies at the desk were super nice "No problem, I have something that will get that right out". Later, I was expressing my dismay to someone and they said, "Now you know how we women feel".  Weird, I didn't know that women had spontaneous bleeding from their calves.  There is so much I don't know.

After we left the temple. we wanted to take a picture of the three of us in front of the temple but had no one to take the picture.  Only a moment passed before a car stopped full of women who were leaving the temple and asked if they could help us.  (Minnesota is overrun with nice people)  As we visited for a moment it turned out that the woman who had stopped grew up in the same general neighborhood where I grew up.  She asked my name and I said "We are the Vogel's"  to which she replied "Eric Vogel?, I was just reading about you on Facebook this morning.  My friend had asked me to pray for you."  Wow, we live in an interesting and small world.


Friday I had my visits with the surgeons.  They were very pleased and kept saying nice things like "You are our star patient", and "We just love it when things turn out this way" and "It's so nice to operate on someone healthy for a change"  They don't know that I have numerous prayers being offered in my behalf.  How could I help but heal well.  They took a panoramic radiograph of my new jaw.  It is so interesting to see the "new me".  JoLynne has been walking around singing  "The leg bone's connected to the Jaw bone". Very appropriate for Halloween.

Today, we went to church, but only the first hour.  For some reason I was really feeling tired.  This afternoon I felt quite a bit better so we went and drove around town and found a cool mansion to walk around.

Tomorrow we meet with the chemotherapy doctors. I am not really looking forward to going through chemotherapy but I also don't want to risk this coming back.  I have read quite a bit about osteosarcomas since my diagnosis.  The survival rates have really gone up in the last few years and it is largely due to chemotherapy.  Sarcomas have a nasty habit of spreading through the blood to distant sites.  Chemotherapy seems to stop that from happening quite effectively.  The good thing about it will be walking up to Bishop Broderick and asking him how it feels to have so much hair.  That will be a sweet day.

A much better day.

It is amazing how different the world can appear after a good nights rest. It certainly doesn't hurt that we started the day in the temple. Almost any day begun at the temple will be better than most. As we were leaving the temple JoLynne mentioned that she had put the names of the surgeons who will be operating on me on the prayer role of the temple. Why don't I think of things like that? Cute JoLynne just smiled and said, "Those surgeons are going to have the best week ever and they won't even know why".

Sometimes miracles are so small they would be easy to overlook. For example, today in the temple we were seated quite a ways back in the chapel. Far enough that we wondered if we would get into the next session or not. For some reason the temple worker came way back to where we were seated and asked JoLynne and I to be the witness couple. It was a small thing but it felt like a simple way for Heavenly Father to say He was thinking about us and aware of our burdens.

Later I had some time to work putting the garden to bed for the season. It will be a little while before I will have the strength to run a roto-tiller again. Later this evening we were able to go to a dinner for my niece who was just married. She looked amazing and seemed so happy with her new husband. Life goes on. It was nice to see my family. When we came home we sat down and watched Peter Pan with our children and just laughed together. I will miss them for the next two weeks.

I forgot to mention that last night, just about dinner time, I had a call from our health insurance. I thought it might be something wonderful, like them telling us they were going to pay for my treatment, instead it was somebody calling to conduct a "10 minute customer satisfaction survey regarding my health insurance" In my mind I thought, "You have got to be kidding!". I didn't really know what to say so finally I just said "You know, I was just diagnosed with cancer and am scheduled for surgery on Monday. I don't think this is a very good time". After a startled pause he said, "How about I take your name off the survey list permanently?"..... I think I may have to use this same line the next time someone comes to the door selling something.

"To infinity and beyond"

Not much medical news today. We had the day off from that kind of stuff. JoLynne and I took advantage of ourtime and drove up to the Temple. We were a little late for the endowment session so we did sealings instead. It was wonderful. As I knelt at the alter and looked at our reflection stretching out forever I thought "You know, each image in the mirrors is like a panel in my life. My present problem seems enormous right now but with time it will just be another panel in a long life leading me back to my Heavenly Father." It was grateful to be able to step back for a moment and see things in better perspective. I also liked the fact that as far as I could see, JoLynne and I were together in all the reflections. I feel pretty blessed.