Thursday, April 30, 2015

Money miracles

This cancer thing turns out isn't cheap.  Who would know.  We have been blessed though.  I really feel like God has looked out for us in this way as well.

Way back when, 20 years ago, when I bought health insurance for my family,  I decided to pay extra so that if we ever needed treatment "out of network", they would pay for it.  I paid for that option for almost 20 years and then my cancer struck.

The first surgery was very complex.  We found a guy at Huntsman who said he could do it but told us he had only done one in his life before.  We just didn't feel good about that.  So we set up appointments at Mayo, MD Anderson, New York Kettering, the top cancer hospitals in the country.  We felt like God would tell us when we found where we were supposed to be.

First stop Mayo Clinic.  We had a consult with the surgeon and others and felt we had our answer.  We cancelled the other consults.  We went to check out our insurance and to our surprise, they had dropped our "out of network" coverage without ever asking us about a month before my cancer.  I was appalled.  I called my insurance agent and he said that the law had been changed allowing them to do it.  Some sort of cost savings measure.  So we were on our own.  I can't remember how much that first surgery was but it was a lot.  At Mayo Clinic, you pay before they treat you.  I remember going to the financial desk a few days before surgery and the lady looking at the paper and then telling us "It looks like your cost will be $180,000.  How would you like to pay for that today?"

WOW!  We handed her all our credit cards and told her to max them out.  Then we ran home and used all our savings to pay them off and ran back and did it again and so forth, finally mortgaging our home and borrowing money from our children until we had enough.  We thought,  "At least we are going to get frequent flyer miles out of this."  I wondered how we would ever dig ourselves out of the financial hole we were digging but we just had to trust the Lord.

So, things went along.  About 9 months later we suddenly had a  purchase offer to buy an x-ray company that I had helped to start.  The offer was too generous for us to ignore so we sold.  Some people walked away from that deal with millions, not us.  But we did make a handsome profit.  After we paid our tithing, taxes and all that stuff it turned out that there was enough left over to pay off all our medical debts and still some left over.  What was left over would pay for the other medical debts that I would incur and then some.  The Lord was looking out for us.

About 3 months ago my father came by and we were visiting.  Talk turned to insurance.  He said, "I don't know why your insurance won't pay out of network, mine will"  I thought, "Yeah, well you have Medicare, kind of a different deal."  But he persisted.  He had some supplemental plan also that would pay out of network.  I had looked for this a year ago when Obamacare first began and found nothing for me.  But, I thought it was worth revisiting.

A little research revealed that things had changed.   Because of Obamacare, I could change insurance and now there were three policies that would pay (a lesser amount) out of network.  I looked at them as close as I could and then made the change.

The new insurance wasn't quite as good at IHC hospitals.  That was a bummer.  I soon found that out when I went to the emergency room.  But then we went to Florida.  We expected a similar overall bill to what we had paid at Mayo Clinic but hoped our insurance would help at least a little.  We took out a loan just in case it didn't.  When we showed up the day before surgery they wanted us to pay again before the procedure.  We sat down and the lady said, "Well, it looks like after your insurance you will owe $2300.  How would you like to pay for that?"  I almost fell off my chair.

A few days later when we went to the nuero-opthamaolgist JoLynne called to see if they would take our insurance.  They told us "No".  We called the insurance, they insisted that we should have coverage.  We went back and forth.  Then the sister missionaries came by knocking on our door.  There were surprised to find an LDS family here.  They were so sweet and asked how they could serve us.  We told them about our insurance problem.  They offered a prayer that the insurance would all work out and that I would heal normally.  JoLynne called back to the doctor.  Someone different answered and said, "Oh, yeah, it's all fine.  Your insurance is already in there and approved"  The next day we went and it cost us $0.  Even the lady at the desk commented "Wow, you have great insurance."  Again, the Lord is taking such good care of us.

Wednesday, April 29, 2015

JoLynne shaved my leg...

Here is a quick update on how things are going.

My recovery seems to be going along nicely.  My pain levels continue to diminish,  I am walking pretty good now even though it is a bit slow, my eyesight is improving every day.

hmm...sounds like me
We went to the eye doctor yesterday.  This was that appointment that Troy miraculously help us to get.  It was a long appointment with a lot of tests.  I am really overprotective of my eyes anyway so this kind of stuff is hard for me.  I was doing pretty well until they started poking my eyes with q-tips and trying to drag them to the side to make sure that they weren't "tethered".  Wow, even numb that was really getting me.  The MRI also took forever.  I was about 90 minutes in the tube.  They just wanted to be very careful.  The long and short of the day was that my lateral rectus muscle on the right eye was damaged or maybe just displaced during surgery.  They say it will take at least 6 weeks to know if it will heal itself or if they will need to intervene in some way.

This morning we met with the microvascular surgeon.  He was very happy with the outcome.  He was so positive.  He talked about how the graft looked perfect and that how once it was all healed he could shape and contour it to my face so it looked natural.  He talked about how he could use a laser to make the colors match and how if the facial nerve didn't heal he could do a facial re-animation surgery.  He mentioned again what a miracle it was that I could close my eye.  I guess the most important thing that he said to me was "Eric, I have given this area and excellent blood supply.  Now those T-cells will have a way of getting in there and getting the job done."  That makes me very happy.

Monkey Jungle with Vivian and JoLynne
We still haven't heard back on histology from Houston.  I emailed this morning and they wrote right back.  Dr. Gottschalk had to go to Germany.  Sadly his mother has colon cancer.  Even though he is gone, Dr. Wang thought that they would have some results back very soon.

So, my face now has leg hairs on it.  Weird.   JoLynne finally had to get out a razor and shave them.  Thankfully she is well practiced at that kind of thing.  That, however, is the first time in our 31 years of marriage that she has shaved my leg.

I have now been cleared to eat whatever I want.  Three days ago I took my first drink of water.  It didn't come out my nose or go down my lungs or pour out my cheek.  It was amazing.  I just sat there crying.  Sweet JoLynne just came and hugged me and said,  "Now it's leaking out your eyes."

This morning I ate three scrambled eggs and orange juice.  Truly a miracle.

Friday, April 24, 2015

Two miracles

Well, each day is a little better.  Yesterday my head felt like they had hit me with a two by four in the head a whole bunch of times.  Today just feels like a really bad headache.

There are two miracles that I should share.  It's important to me to share them so that God knows that I saw His hand in my life.  I do see His hand frequently.

When I came out of surgery one surgeon told me that my radiation damage was the worst he had ever seen.  Apparently they spent over an hour under a microscope trying to dissect out my facial nerve from the radiation damaged tissue.  In the end the nerve simply crumbled in their hands.  Dr Marx decided to simply lay the broken pieces back where they were supposed to be.  When I woke up they asked me to blink and I did.  None of the surgeons could understand how that was possible since they had all seen the nerve crumble.  One of the surgeons, Dr. Green, said, "There is simply no way you should be able to blink but here you are, we can't explain it"

A second miracle that may seem smaller but it was important to me.  On Monday I was feeling pretty depressed.  I guess some of that may be normal after a big surgery but knowing that didn't help.  I was in a lot of pain and the medication was only taking the edge off.  When I look in the mirror I see a pretty deformed face looking back at me.  I have no right jaw bone anymore and I lost of lot of teeth.  Then my eye wasn't focusing correctly, which for me is a really big deal.  If I can't focus, I can't do dentistry.  That means being forced to give up the profession I love so much.  We talked to my brother in law Troy.  He is a nuero-opthomolgist.  He said I needed to be seen soon by someone in his field.  He gave us some names of doctors in Miami.  We asked the medical staff for a consult and they said "It's essentially impossible to get an appointment with them.  Your best bet is to bring a bunch of food and just camp there and hope that they will look at you."

Somehow, with His help, we will get through
I guess all in all I was feeling like, "Wow, three and half years later and here I am back here and still not cured.  I'm so tired of struggling.  I wonder if God has forgotten me."  Those kind of feeling were pushing their way into my mind.  I sent Troy a video of my eye movement.  Shortly after he texts back and says, "Wow, crazy but I am at a seminar and who should I run into but the nuero-
ophthalmologist that I wanted you to see.  We looked at your video together.  He says he would be glad to see you and took your phone number and said he would call."  And then Troy said "Eric, you are not forgotten"  Those words and the miracle of him running into this guy right then was what I needed to pull me out of the dumps.  And the doctor did call about an hour later.  We have an appointment on Tuesday morning.

I know God doesn't forget any of us but in the heat of the struggle sometimes it is hard to remember.  My faith should be stronger.  I am grateful that when I go past my limits of faith that He reaches out in love to lift me up as only He can.

Thursday, April 23, 2015

Racing stripe

My double chin is a bit off center
This would cover a few flaws
Well, it is Thursday.  I am out of the hospital as of last night.  I have both ears, contrary to that stupid dream I had.  I;m a little loopy.  The graft looks very strange but they tell me that is normal at first.  I'm not sure if they meant that the graft usually looks strange or that I look strange.  The later is fairly certain.  Right now the graft area in the neck is really large.  It looks like they took the double chins off of a whole room full of high priests pasted them on my neck.  Oh, well, there goes my chances at the beauty pageant.  I guess I will just have to excel in the swimsuit division.  JoLynne talked about having me wear a Arabic turbin.  That could be cool but I would want a scimitar to go with it for sure.

Racing stripe
My right thigh is....different.  They took a huge chunk out to rebuild everything.  From my hip to my knee.  And then some dang fancy stiching.  I guess the microvascular surgeon told them that he didn't think it would be possible to sew it closed.  I think that must be like operating room trash talk or something. So, two surgeons jumped on my leg with suture needles flying.  At least that is how I remember it but I was asleep.   Needless to say, they got it closed.  It's tight though and I have to be careful how I move it for now.  Shortly after I woke up JoLynne said "Do you want to see your leg?"  I was still drugged or or I probably would have said "No".  But she showed me.  The first thing I thought when I saw it was "Hey, a racing stripe!"  I can walk but very slowly and it helps to lean on something.

I am having a little trouble controlling the movement in my right eye.  Because of that, I was wearing an eye patch last night when my granddaughter Vivian called.  She took one look at me in the computer and said. "Grandpa, I want to see both of your eyeballs"  I told her why I had a bandage on my eye, she thought about that for a minute and said "Okay, I want to see grandma then"  That's okay, we will get it all figured out.  They arrive here on Saturday.  I am sure looking forward to that.

Saturday, April 18, 2015

Out of Surgery - the next day.

Eric got out of surgery late last night.  He is doing fine and the surgery went well.  The surgery took 14 hours.  They removed all the dead and radiation damaged bones and tissues and were able to remove about 90% of the cancer.  They took muscle and skin from his thigh to close the holes in his sinuses, mouth, and face.  He can already speak better and open his mouth wider.  He will be in the hospital for several days and then will need to stay in Miami for a month to monitor the surgical site.  The doctors are very happy with how the graft was looking this morning.  During the surgery the facial nerve crumbled away due to radiation damage.  They did a nerve graft and told us that he would have a droopy eye, but his eye seems to be functioning completely normally- which is great news.  They have sent off samples of all the cancer tissues to Baylor for evaluation to determine how well the clinical trial has been working and if they should continue with it or switch him to a different clinical trial. 

Talking is difficult for him right now, but he wanted to tell everyone thank you for all of the prayers on his behalf.   As his family, we are also extremely grateful for all the prayers and faith on behalf of our dad.  We feel strengthened and uplifted by them.  

love, The Vogels

Thursday, April 16, 2015

Twas the night before surgery......

View from our backyard
Me and Beautiful JoLynne 
Well, here we are in beautiful Florida waiting for surgery.  We met with Dr. Marx yesterday to talk about the surgical plan.  There has been an active discussion going on between my doctors in Provo, Houston and here.  My infectious disease doctor in Provo says that I have a psuedomonas infection in my wound adhering to the metal that was put there during the first surgery.  Psuedomonas is a nasty bacteria that is really good at evading antibiotics especially if there is metal present.  So, after some discussion it was decided that my reconstruction will be done in stages.  Stage one, tomorrow, will involve removing all of the dead and radiation damaged tissue and also debulking any tumor that they may find. and then using tissue from my tummy or thigh or both to close up the holes in my face, mouth and sinus.  At this point they are going to leave me without a right jaw bone while the infection heals up.  Honestly I believe that even without a jaw bone I will be a lot better off than I am right now.  My current joint doesn't work at all and most of my problems are from dead tissue and holes where there shouldn't be holes.  In 4-6 weeks they want me back in Houston for more T-cell therapy at a higher dose.  Then in a few months, I will come back to Miami for the jaw bone reconstruction.  At that point we may do it in titanium or perhaps grow a new jaw bone and do it with cloned bone tissue.  Dr. Marx is a pioneer in that field.

Enormous crocodiles
I don't know why, but after our visit yesterday I was just kind of discouraged and anxious.  Dr. Marx didn't tell me anything unexpected but still, that is how I felt.  Not too long after our visit our daughter Shanelle called up and talked for a while.  Cute little Vivian in the background was chiming in too.  She is so verbal for a two year old.  I can hear her in the background telling her mom "Mom, I'm constipated.  I don't want a suppository."  What two year old talks like that?  She makes me laugh.  Shanelle and Vivian are going to come to Florida about two weeks after my surgery.   I told Vivian that we might go see crocodiles.  She said, "Are they enormous crocodiles with secret plans and clever tricks?"  Her dad has been reading Roald Dahl to her and it shows.  After talking with them the shadow lifted and I felt good again.  I have a sweet, inspired daughter. (and a dang cute granddaughter)
Don't forget the ear.

I dreamt the other night that Dr. Marx forgot to re-attach my ear in the surgery.  When I woke up from anesthesia I noticed my missing ear and brought his attention to it.  He looked and shrugged saying, "Drats, I hate it when I forget those things.  Oh well, no big deal, we'll buy you a rubber one to wear.  Lots of people have those."  Dreams are so dumb but in my dream I kept wondering how I would keep my glasses on at work with only one ear.  I should have mentioned my dream to him during our consult yesterday but I just couldn't find the right time to bring it up.  I don't think he will forget my ear.  We had our consult in his office.  He has so many awards that it literally filled up all four wall from top to bottom.  He may have to retire soon, there is no more space on the walls.

In the meantime, thank you all for your prayers and faith.  JoLynne and I have come to depend on them.  Thank you.

Friday, April 10, 2015

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.

Monday, April 6, 2015

Endodontic epidemic

Today I woke up with my face all swollen.  This isn't my first rodeo.  I know the signs of an abscess tooth.  My dear friend Daniel Burr began root canal treatments on almost every tooth on my right side.  Now two more have gone bad.  Maybe I caught something at the office.  I wonder if abscess teeth might be contagious?  Oh well, it is what it is.  So I got to spend part of my day at the endodontist.  I was so grateful that Dr. Jensen could fit me into his schedule.  He was so kind.  He began two more root canal treatments and hopefully my face will soon return to normal proportions.

Thursday, April 2, 2015

Face lift and tummy tuck coming up

Tuesday was a very good day.

I had my scan on Friday.  Usually we can go and get the results right away, usually within 3 hours but somehow there was a hangup.  They kept having problems.  So the days went by and still no results.  I was beginning to imagine things like, "Maybe it's bad news so they don't want to tell me."  Finally I just decided that I didn't care what they told me, I know what I believe that God has told me so that information trumps all doctors.

Finally we had a appointment with our doctor on Tuesday.  We went in and he said, "I'm sure you have already read your report."  We usually do.  This time we told him that we didn't know anything about it.  He smiled and started to read.  "No change in tumor size since February scan"  JoLynne and I went out in the hall and cried.  JoLynne said she felt like going dancing.  I couldn't think of anywhere to dance at 11:00 am.  Our daughter suggested the senior citizen center.  We didn't take her up on that.

No growth is great news.  Because I have a hard tissue tumor it won't shrink for a long time, even if it is dead.  The fact that it isn't growing is awesome.  The only time in the last three years that I have had the tumor growth stop for any length of time was when they hit me with that massive radiation that I am still suffering from.  That stopped it for a year.  Frankly in that area it is still stopped.  Everything there is stopped dead...literally.  Healthy tissue and cancer alike all dead.

So now the path is clear for reconstruction...Yeah.  In about a week and a half we leave for Miami.  April 17th will be the surgery.  We arrive a few days early to do preliminary work.  JoLynne has rented a house that will be very nice to recover in.  I will be a week in the hospital and then will need to remain in the area for a month in case there are complications.

I'm pretty excited to have a complete face again.  They will be using skin from my tummy, literally they are calling it a tummy tuck.  They asked me to gain weight and I have really tried.  It hasn't been easy.  A dear friend and neighbor clued me into some stuff that body builders use.  1900 calories per serving.  WooHoo...That has helped a little.  I am now eating about 4500 calories a day and my weight is inching up 1/2 a pound a week.

I have been so blessed.  I know that the prayers of so many have made a difference in my life.  Thank you.  I love and appreciate you.