Monday, December 12, 2011

Cancer must be catching

Just a few empty seats


It has been a little over a week since my last post here.  I really should have written sooner  It was a wonderful week.  I am learning through personal experience more about this chemo business.  Hitting your "low" is no fun and feeling good thereafter is amazing.  Boy it brings that "opposition in all things" scripture to life in a very real way.  

Last week JoLynne and I traveled back to Minnesota again for follow up visits with the surgeons.  Mayo clinic will always be a place of miracles to me.  The surgeons were delighted to see how I was progressing.  As we visited with one of the surgeons, an LDS man, he said, "You know, I can always tell when we operate on someone who is being prayed for.  Things just go differently in the operating room."    He then told us that a number of such miracles occurred during my surgery.  I think we are aware of many of them but he told us something that we hadn't heard.

Apparently, when the tumor was removed it was given to the pathologists who were in the operating room.  While they began their initial analysis, the surgeons proceeded to take out borders around the tumor to make sure that the cancer hadn't spread into adjacent tissue.    After a bit, the pathologists announced that my tumor was benign.  (They changed their mind later, as you may remember).  Our surgeon told us that the normal protocol at that point would be to discard the borders that had been harvested.  It makes no sense to analyze the borders of a benign tumor.  He said that they were about to throw them in the garbage can when one of the surgeons said, "I just don't feel good about that.  I think we need to have the border evaluated still.  Send them to pathology."  They proceeded to send them to pathology and, as you know the tumor later proved to be malignant.  The borders that were sent and reviewed were all clean.  If they had not analyzed the borders they would have had no way of knowing that it hadn't spread and I would have had to go through radiation therapy as a precaution.  It would have made my recovery much more complicated.  So, for those of you who have been kind enough to pray for us through this challenge, THANK YOU AGAIN! Prayer really makes a difference!

Our trip home was also good.  We had a little extra space on the airplane, as you can see.  My guess is that there are rumors going around that cancer is contagious.  With those kind of rumors we may have trouble getting plane tickets in the future if the airline industry sees a pattern.

Well,  on Wednesday I began another series of chemotherapy.  I felt well enough today to go into to office.  I was grateful.  I was able to provide some services to some of my sweet patients.  We will see what tomorrow brings.  "One day at a time"; that is my motto these days.

Saturday, December 3, 2011

Thankful

Just a little bump, probably the onion rings
So, it has been a busy week.  I have felt great and as a result I have been able to work more.  In addition we have had a series of social events.  Friday we had an open hours for the office to let everyone see our remodel and wish them a merry Christmas.  Last night was the Stake Christmas open house and today is our family Christmas party.  It just seems like I have been "running".  It is so nice to feel better and able to do more.  At our office open house I was not very good and shook hands with lots of people.  That got me in trouble with my guardian angel (JoLynne).  My friend, Rella Christensen, a pHd microbiologist who has been looking out for me is going to give me a scolding too.  So last night JoLynne and I made a bet that I couldn't go the whole night without shaking someones hand.  We usually bet a kiss or something so I always win either way but there is the moral victory of course.  Anyway, I won the bet last night and went the whole night without shaking a single persons hand.  The real prize was having JoLynne be happy and not worried.  When we got home from the party neither of us had eaten much.  I just can't figure out how to get food in my mouth with a mask on.  So, it was 9:30 pm and we hadn't really had dinner.  JoLynne said, "so, what do you want to eat?"  I was kind of embarrassed but I told her I was really in the mood for onion rings.  She just started laughing, "You are so pregnant!" she said.  For years I always offered to have the next baby.  I always thought it was a safe offer.  Little did I know.  I'm not showing yet by the way. (okay, maybe a little)

I have always appreciated having good health.  As a matter of fact I always made a point of telling Heavenly Father how much I appreciated my health in hopes that He wouldn't feel the need to take it from me.  Well, that trick doesn't work.  This week, feeling better, has truly made me appreciate how good it feels to feel good.  I'm not looking forward to the next round of chemo starting Wednesday, but it helps to know that after a few dark days that I will have days when I feel well.

We are leaving for Mayo Clinic on Monday.  We have appointments all day Tuesday and then we will be flying home Tuesday night.  I am excited.  One of my appointments is with physical therapy.  They have some electrical methods of accelerating nerve recovery.  They call it "facial animation."  Usually that is what happens to my face when JoLynne walks in the room.

I love visiting with cancer survivors.  Some dear friends came to the open house.  I remember feeling my heart go out to my friend while his wife suffered through cancer.  On Friday I looked at her with her beautiful hair and a smile that spoke volumes about her courage.  I have to admit I ran my fingers through her hair just for the joy of seeing her so normal.  It makes me think, "I am going to get there."

I have been so grateful for countless acts of kindness.  I could never name all the people who have reached out to us with helping hands. This last week, a friend came by while I was taking care of patients.  We have been friends for many years.  He somehow knows my situation better than some.  Anyway, he was so kind and caring.  He offered some help that was deeply meaningful to me.  I couldn't stop crying after he left.  I think I cried for two hours.  He isn't alone of course.  Every time I turn around someone is lifting and helping.  I've notice that since my diagnosis I never have anything in my inbox at the stake center.  Last night I confronted the other counselor and said "Why is there never anything in my inbox anymore?"  He just smiled and said, "Eric, we are going to get through this thing together"  People are so good and I am so grateful.

Tuesday, November 29, 2011

Still kicking

It has been a while since I last sat down to chronicle my journey through cancer.  Partially it's because I am lazy, but mostly it has been the difficulty of the last two weeks.  Chemotherapy has been a lot more harsh than I expected.  For the 14 days following chemotherapy my energy and well being steadily declined until I hit the bottom last Wednesday.    That's not to say that I didn't have times when I felt better.  For three or four days I felt well enough to go to work in the morning but then I would come home and crash.  Twice I felt bad enough that I had to go to the clinic and have fluids and medications given.  Wednesday morning I woke up and had no energy.  Just walking to the bathroom would exhaust me.  My ear was swollen near the surgery site and I had a fever.  We have two thermometers so my temperature was either 100.8 or 101.4, depends on which thermometer we believed.   We called the nurse and she sent us to the Emergency room.  It was a long day.  They drew blood, took urine, took x-rays etc.  Finally they came in and the ER doctor sat by my bed and said, "Your white blood count is in the toilet.  You have no white blood cells left except a few we found in your urine and you have an infection.  We are going to have to admit you to the hospital."  I was barely conscious and not liking what I was hearing.  They started me on IV antibiotics through my port and pushed fluids by the oncologists orders.  After a couple of hours they came back and had decided that because my son-in-law is a nurse they would let me go home if I wanted.  Heck, I wasn't anxious to stay in the hospital.  That's were you get really bad infections.  We were glad to be discharged.  The nurse came in to take out the needle in my port.  She kind of woke me up and said, "You are going to feel a tug as I pull this out".  Just as she said that this voice went off in my head.  "Don't let her pull it without flushing the port and heparin!"  I woke up just in time and asked her about the flush and heparin.  Her countenance just dropped.  "I can't believe I almost forgot that".  She left the room to get what she needed to do it right.  A port is like a little plastic box in my chest that connects directly to my major blood vessels that enter my heart.  If you don't rinse it you can end up with infections in them, very nasty. The heparin keeps the box from filling up with clotted blood, again a very nasty  and dangerous problem.  I was so grateful that I was protected.  The nurse really felt bad and I told her, don't worry, the important thing is that we remembered.  I'm glad for that prompting.

The next day was Thanksgiving.  I was going to write a blog about so many things I was thankful for but I just couldn't get up enough energy.  I told JoLynne, I feel like I have a great engine and one teaspoon of gas.  Every time I would get up I would have to lay back down and get my teaspoon back again.  I did feel well enough to sit at the table with everyone for about half an hour which was nice.  From that point on my energy has been returning.  Everyday I have felt better than the day before, more energy, less tired, less pain.  Somedays, I feel almost normal.

Yesterday my hair started falling out in earnest.  Every time I would run my hands through my hair my hands would come out full of hair.  I didn't expect this to bother me so much as a man but it really did.  For the last few days I kept having nightmares of my hair all being on my pillow in the morning or something like that.  I told JoLynne that I was going to pray that I woke up with all my hair gone and that she had a 3 inch pony tail.  She laughed and didn't think God would allow that miracle.  Well, I finally got tired of watching it fall out slowly and we decided to cut it all off last night.  Mike, my son-in-law, wanted to cut his hair as well, which I kept telling him was unnecessary but he insisted.  We got Seth online via Skype so that he could watch the festivities through the computer.  First Mike cut off my hair than I cut his.  Then Spencer popped up and said he wanted his off as well.    Spencer's hair is amazing,  thick and soft and so full.  Kind of a shame to cut it but he insisted.  So three heads got bald that night.  Several men in the high priests quorum have offered to cut their hair as well.  Gee, it's going to be cold winter for all of us.  Today, Seth sent an email from China.  He went to the barber the next day and had his hair cut as well.  We didn't go all the way bald since I worry about cutting myself with a razor while on chemo so it's just really short.  I went in to shower and looked at myself in the mirror after the hair cut.  I decided that  I look like one of the pictures of the Jews in the concentration camps.  Mostly bald and so pale and emaciated due to the chemo.  Lucky for the rest of the world that I wear clothes.  Trust me, it isn't pretty.
Sampson before Delilah
What I was getting every time I touched my hair
Not quite as bald as Bishop but I am working on it






Bald is beautiful


Even in China

Saturday, November 19, 2011

The quiet battle

notice the nice clean floor
So, I think that I have decided that this stage of the journey is more of a quiet battle.  The victories each day seem trivial and yet they aren't to me.  For example, today I moped the kitchen floor.  Wow!  Hardly blog worthy and yet it took a lot of my strength and I had to take a nap when I was done.  More importantly it meant something to JoLynne.  I am unable to contribute much of anything but at least that was something.  I ate two eggs and two sausage today.  Hardly noteworthy you might say and yet every bite was a battle for me.  I hate to admit it but I was quite proud of myself when I was done.  My prayers on the food now go something like this "Heavenly Father, please help me to eat this food"  Short and sweet but sincere.

Honestly there are successes to celebrate.  For example, I am now walking without crutches.  I use a cane sometimes but most of time I just hold JoLynne's hand.  My leg doesn't hurt anymore hardly at all.  Today my naps were only an hour instead of two.  I walked all the way around the block with JoLynne and didn't even hardly stop once.   I had the energy to write a letter to my son on his mission and to begin reading a novel to my children.   I think that I need to focus on the fact that even though today wasn't great it was much better than yesterday.  That is what I need to keep watching.  Really it has only been two days since my last dose of chemo.  I need to be patient.  That was never my best trait.

We still feel outpourings of love from those around us.  Today we had one friend bring us a wonderful soup, another brought us pies and a third brought us some delicious scones.  I will try to eat a little of each but it will take some effort.  My family is loving it though.  Mostly I appreciate the continued faith and prayers in my behalf.  I know that I am going to get better.  It will just take time.  Thank you for your continued love and concern.

Friday, November 18, 2011

Kemo Sabe

One course of chemotherapy down and five to go......  Wow, this is an adventure.

Chemo center
For me a course of chemotherapy consists of thee days.  The first day I am give two drugs that take about 6 hours to administer.  The time went by quickly.  JoLynne and I sat and visited without being interrupted which was unusual.  The second day was about 2-3 hours with just one drug given and the third day was the same.  After the first day I was tired but okay.  I went to a Stake Bishops meeting.  I was able to present the portion that I was assigned and then I started to feel pretty gross.  The Stake President leaned over to see if I was okay.  Hoping that it would pass I said I was okay.  Ten minutes later I was pretty sure it wouldn't pass and asked to be excused.  The Stake President was very sweet.  He had the other counselor walk me to the car to make sure I was okay and my neighbor drove me home.  He is a good man.  I came home pretty wiped out.  It's strange to be fifty years old and feel like you are eighty.  Day two wasn't too great either.  Getting the chemo wasn't bad but the rest of the day I was exhausted and nauseated.  I went with JoLynne to an orthodontist appointment for our children.  As we were leaving I was practically blown away by the smells emanating from a business next door to the orthodontist, some sort of herbal store.  YUCK!  The smell seemed to follow me downstairs.  JoLynne was asking how I was feeling.  I told her that smells were really bugging me, I felt nauseated like I didn't want to be far away from a toilet and that I was tired all the time.  She thought about it a minute and pronounced that I was pregnant!  Now I am feeling really bad that I played a key role in her feeling this way eight times.  She tells me that she isn't mad and that she got something cute at the end.  She is just too nice.

Speaking of JoLynne, she is the embodiment of an angelic person.  She is so patient, kind and caring.  She never acts like I am a hardship at all and just treats me so kindly.  I'm not easy to feed these days.  Nothing really sounds good to eat.  She is so patient looking for things that might sound good.  She gently encourages me and praises me even when I don't really do very well.  She is always finding something to praise me for.  "Eric, looked, you closed your eye a little more" or something like that.  I tell her how badly I feel that I can't contribute more right now around the house.  She simply tells me "You are getting better, that is your contribution"  I wonder if I could possibly be as patient as her.  I kind of doubt it.

This morning I woke feeling better.  My appetite was slightly back and I didn't feel quite as tired.  We ran some errands and then I came home and took an hour nap.  Yesterday it would have been a two hour nap.  I am learning to just take one day at a time.  I just can't plan for tomorrow because I don't know what tomorrow will bring.

My children have also been so sweet.  Many of the things the I would normally do around the house they are doing.  Cleaning out the rain gutter of leaves, taking care of the animals, winterizing the yard.  Elizabeth will often come up and just rub my hair or my feet because she knows that it relaxes me.  She is so tender.  Adam, who hasn't ever mowed the lawn before got out an mowed up all the leaves yesterday.  He was quite proud of himself and I was grateful.  Shanelle and Mike have been incredible.  Shanelle went down to my chemo session with me on Thursday.  It was delightful to visit with her.  She is a gem.  Mike is always coming around doing something to help.  At the moment I am writing this he is doing our dishes.  We are so lucky.

Well, I have 18 days until the chemo comes again.  I don't know how these days will play out.  One day at a time.  I will try to be patient and I hope that those around me can continue to be patient with me.

Monday, November 14, 2011

"Viewer Discretion Advised"

Tomorrow begins the second leg of this journey.  At 9:00 I am starting my first dose of chemotherapy.  The treatment tomorrow is supposed to last about 5 or 6 hours.  Wednesday and Thursday will be an hour or two each. I am a little bit scared and at the same time I'm kind of relieved to begin so that I can finally be done and move on in my life.

Let me back up a bit.  Up until last Thursday we were in quite the quandary trying to decide about whether or not we should take Methotrexate.  Thursday night JoLynne and I went to the temple with Shanelle and Mike.  Mike had a cough.  I was exhausted. Shanelle and JoLynne were feeling okay.  Each of us received a clear answer in our own way.  I wasn't feeling well and I told Heavenly Father that I didn't feel well and I wasn't up to figuring out a "subtle answer".  I was blessed with a very clear, undeniable answer that we should not do the Methotrexate.  I trust that God knows whether or not that drug would be of value to me.  He clearly told me that it was unnecessary.  I am so grateful to be able to go to the temple and to receive answers.

I was able to work every morning this week.  It is great to be back with patients.  I come home tired and sleep for an hour or two.  I guess my body still needs it.  I don't really understand what my body is doing these days.  JoLynne is doing her best to help me gain weight.  My caloric intake is quite impressive and yet I don't gain an ounce.  Saturday I ate nearly 5000 calories and still lost a pound.  I was telling my Stake President about it on Sunday morning and he looked at me and said, "Rookie, I can get that many calories in one dessert."  Wow, I need to find out what dessert that is and add it to my diet.  The only thing I can figure is that there is so much repair going on from all of the surgery that it is burning up everything the I eat. Or, maybe I accidentally swallowed a black hole and everything I eat is being transported somewhere across the galaxy.  (I know, too many Star Trek episodes)

Sunday was a busy day.  I got up at 6:30 to go to meetings.  We met until about 9:30 then we had two elders quorums presidencies to set apart at 11:00 then church at 1:00 and another Elders quorum presidency at 2:30 then temple recommends at 4:00and more calling to extend at 5:00.  I arrived home just after 6:00.  I had hoped to go to a viewing of a friend but there just wasn't time.  We had a High Priest quorum meeting at 7:00 and finally home at 9:00.  I should have been absolutely exhausted.  Usually just working a morning tires me out.  I was tired but not beyond reason.  I really felt like the Lord blessed me with more strength than I would have normally had to do his work.

This morning I had a surgical port placed in my chest to administer the chemotherapy through.   A port is like a junction box placed just under the skin and then a tube runs from the box to one of the big veins near your heart.  It gives the doctors and nurses a good way to draw blood, give chemo etc without trying to find a vein.   I was a little nervous but everything went without any problems.   I know it was nothing like the last surgery but suddenly the thought of someone cutting on me just kind of freaks me out.  I am grateful that everything went well.  I was trying to convince my children that with a port in place I would now be able to upload information directly to my brain using a USB drive.  I don't think that they believed me but you have to admit, it would be way cool.

This evening I had a blessing from my father and a dear life long friend.  Just when I think I have my tear glands under control I find out that they have a mind of their own.  I find that these days I cry most easily when I feel the Lord's love for me or when someone I love does something that shows me how much they care.  Mostly happy tears.  The friend who helped to bless me is the father of my best friend growing up.  He is a good man and a dear friend.

This evening another friend from the Food and Care coalition came by with a picture that was drawn by one of the cooks at the Food and Care.  It was taken from a photo taken in Russia when I worked on a sweet little, terrified girl.  It broke my heart to have to hold her down to treat her but her mother assured me that if we didn't do the work then nobody would and her toothache could result in dire consequences.    She screamed and cried throughout the treatment.  I thought she would hate me forever.  Instead, after finishing the work, this little girl reached up and put her arms around me and hugged me.    That is when they took the picture.  A very tender moment for me and a sweet memory.  Okay, there goes more tears.  Oh well.







Someone told me that they wanted to know what was going on with my leg.  Well, it is healing slowly.  As you probably know they took the whole middle part of my fibula from my right leg to make a new jaw.  In addition they also took the muscle and the skin to use as filler in the jaw reconstruction.  I read today in a copy of the charting that was sent to me that my right leg had a tourniquet on for over 40 minutes.  No wonder that leg is kind of tender.  I'm glad it didn't fall off.  Needless to say the hole where they stole the bone and tissue was sizable.  They couldn't leave that open so they took a piece off my right thigh and transported it to my calf to close the hole.  My thigh is just healing up slowly on it's own.  It is a really cool, very rectangular scab.  The grafted tissue on the lower leg is also healing well.  The leg bone is now missing six inches out of the middle of the bone which will always be gone.  I have to treat it like a broken bone, wearing a cast and limiting pressure on the limb.  Today was the first day I could replace my crutches with a cane.  (made by my dear neighbor).  Two more weeks and I should be able to take off the cast.  The bone won't grow back together but I guess with time the muscle will bind and splint the two broken ends so that they don't move.  It hurts a bit but not unbearable.  I am going to have some pretty impressive scars when this is all done.  JoLynne won't like it, but here is a picture of my calf.  It really is looking a lot better.  All of the pink area is where the blood supply has re-established.  It is so miraculous what modern medicine can do.

Wednesday, November 9, 2011

Farewell to nose hairs

So on Monday we met with the chemotherapy doctors.  So, let me start with the good news.  For years JoLynne and I have had a standing joke.  When events like Christmas and Birthdays come around JoLynne always asks "What do you want for _____?" To which I always respond "A nose hair clipper"  The sad thing is that as the years have gone by that request has actually become a lot more legitimate.  It's like I am swabbing my nose with Rogain or something the way those crazy nose hairs grow.   If I left them alone I could almost do a comb over.  So, here is the good news.  The chemo docs informed  us that 12 days after the beginning of chemo I will lose my hair including my eyebrows, lashes, beard and NOSE HAIRS.  It looks like I am finally going to have to come up with a different answer to that question and JoLynne will have a six month reprieve from telling me when I have a stray hair hanging out of my nose.  They say that when my hair comes back it sometimes comes back curly.  That would just be weird in my nose.  Last night we had a Stake meeting with the High Council.  The other counselor in the Stake Presidency was trying to sell my hair to the highest bidder.  With half the men in that room missing hair on top you would have thought that the bidding would have been more lively.

The chemo doctor on Monday was very nice.  He took a ton of time with us.  Reading and talking about different options.  Two drugs are for sure.  One is Cisplatin and the second is Adriamycin.  The plan right now is to have me get a port surgically placed in my chest on Monday and then Tuesday I will be given Cisplatin and Adriamycin.  Cisplatin  is pretty caustic and has to be given slowly so that day will last 5-6 hours.  On Wednesday it will be just Adriamycin for 1-2 hours and Thursday the same.  Then I all have 18 days off and then repeat.  They plan on 6 courses of chemotherapy.  If there are no holdups then I will be done in 18 weeks.  There are often holdups.  Already today I seem to be developing a sore throat.  It is hard to be around so many people and not catch anything.  We will see what that does to next weeks plans.  There is a third drug that the doctors at Mayo would like to have me try called Methotrexate.  The doctor here really discouraged it.  He said that I am out of the age range (usually they don't give it over 35 years of age) and he said it has some scary possible side effects like kidney and heart failure.  Plus, he said that if I take it I will be on chemo every week for 6 months and I will feel like garbage the whole time and basically live at the chemo facility.  We talked to the Mayo doctors again and they tell us that they still think it would be okay to use the Methotrexate, however, it's also okay with them if we delete it.  The participants that talked about my case at the national sarcoma conference were split 50/50 on whether or not to use Methotrexate.  We are going to go to the temple tomorrow and try to get an answer.  God knows what we should do.  He has been pretty good about answering us so far.

I have been back to work the last two days.  It has been very nice.  I have only been working mornings and then I come home and have a long nap.  Who was that guy who used to run 26 miles?  Now I feel proud to walk around the block without stopping.  Last night I was huffing and puffing when JoLynne came in the bedroom.  She asked what I had been doing.  I was embarrassed that all I had done was change my clothes.  Oh well, it seemed like a workout.

I love to talk to cancer survivors.  This evening at a stake YW event I talked to a good friend who is five years cancer free.  Today at work one of my patients told me that 10 years ago she was diagnosed with a soft tissue sarcoma with a really long name.  She recounted to me the miracles that had led to her survival.  What an inspiration.  She looked great and seems so put together.  I want to be a "survivor".  I want to inspire others to have the faith that they can make it too.  I guess there is no way to hurry that up.  Just wait, believe and trust that God will do the rest.  One of my dear friends brought by a rock with a saying that really touched me.  A year ago when my brother in law had a heart attack and 7 bypass surgery we went down to visit him.  He told me at the time something very similar.  He said "I have learned something from the parable of the man who built his house on the sand and on the rock....They both got rained on."

This morning I had a strange dream.  I was in a big room filled with people who were sick with various ailments.  The Savior entered the room and was healing some of the people.  He was coming my way.  Finally, He stood before me and I was so excited to be healed and done with all of this.  I felt like I had the faith.  He looked down at me and said, "I can't heal you yet."  I asked him why and he looked at me and said, "You have so much to learn from this, it would be so unkind for me to take it away from you."  Okay, here is where I reveal my true character, I woke up kind of mad, thinking, "haven't I learned enough yet?" Later I wasn't so mad.  It was just a dream but I need to be more humble.

Okay, I know that I already posted a picture of my new jaw but I took another picture at my office when I got home.  Pretty much I just want to show off the fact that I have a better panorex machine than they have at Mayo Clinic.  There you go, that darn pride again.  Anyway, here is the new panorex.  Notice all of the staples in my neck below the bike chain.  The staples were used to shut off "bleeders" during surgery.  I hope that those arteries didn't supply blood to anything important.  Probably just to my brain or something.

(double click the picture to make it bigger)



Sunday, November 6, 2011

Ice Cream and Chemo


Hello again.  I am slowly recovering from my surgery.  I feel twinges in my facial nerve.  It's kind of weird like waking up from dental anesthetic.  I still can only manage a half smile.  JoLynne has me on some deal where I have to smile and laugh so much every day.  She says it does something good to the chemistry in my body.  The other day I asked if I would have to smile twice as much since only the left side currently goes up when I smile.  She just laughed and said "Of course"  What a slave driver.  She also has me on a weight gain program.  She is determined to fatten me up prior to chemotherapy.  I'm pretty sure that forcing someone to eat all the time is a form a torture and probably illegal under the Geneva convention.  I need to do a bit more research on that.  Gaining weight has not been easy.  My body just seems to reject the idea.  I think it may relate to post surgical stress.  I know that my heart rate has been almost double what it normally is.  I just seem to burn off everything that I eat.  I wonder if I might be the world's first case of ice cream overdose.  I'm certain that if they haul me to the ER that JoLynne wouldn't let them pump my stomach.



I have been reading about chemotherapy and osteosarcoma.  I feel like I need to know enough to ask the right questions.  Friday I probably read three dozen scholarly papers about Methotrexate, the chemotherapy drug that they are debating about.  It was kind of discouraging.  Osteosarcoma isn't the best kind of cancer to get either.  I didn't like the statistics that they quoted.  Finally I just had to stop reading and tell myself that I had assurances and blessings that tell me that I don't have to worry.  God will take care of me!  A good friend of mine who has been through cancer, wrote me a card that I now carry in my scriptures.  It says "You are not a statistic, you are a survivor!"  We meet tomorrow with the chemotherapy doctors and hopefully will have more information.  High dose Methotrexte sounds like a nasty but effective drug.  In all the papers that I read I haven't yet found a case where they tried it on a person my age.  That is a concern.

Well, after all that scary reading JoLynne came in and said "There is no way that you are going to bed with all that on your mind."  She found an old episode of Giligan's island and we watched that.  She is so wise.   Gilligan's island is always good medicine.  Pretty much no adverse side effects.

Thursday, November 3, 2011

Be it ever so humble....

Coming home has been such a flurry of activity that I kind of forgot to write for a few days.  It is so good to be home!

Well, on Monday before we left Mayo, we had the opportunity to meet with a member of the sarcoma team and talk about the next step in my treatment.  A wonderful Doctor named Steven Robinson came into the room.  He is from Jamaica.  He told me, I feel like I know you so well but why don't you go ahead and tell me about yourself.  I thought it was funny that he thought he knew me so well but whatever, I proceeded to tell him about myself and what had happened thus far with my cancer.  After I finished he told us that he had just come from the national sarcoma conference where he had presented my case to all the top minds on sarcoma in the country.  "I have been studying you almost non stop for the last week, it's nice to finally meet you," he said.  I thought, "It's no wonder we have had a hard time getting in with the sarcoma people, apparently they were all at this conference."  I guess my case was unique enough that it made for some lively discussion.  I am always grateful when I can be entertaining.  There was a roundtable discussion about what would be appropriate for me from this point forward.  Everyone present agreed that I wouldn't need radiation.  Everyone also agreed that I should have chemo.  That is where they stopped agreeing.  Had they known that I had a high grade osteosarcoma they wouldn't have done surgery first instead they would have done 2 months of chemotherapy and then surgery.  However, when the surgery was done they found that my tumor acted as though I had already received the chemotherapy. (non invasive, benign borders).  The normal protocol at that point would be four more rounds of chemotherapy after surgery.  Some at the conference thought that I should still have the two pre-surgical rounds in addition to the normal after surgery four rounds. Others thought the four after surgery rounds were enough.  The other point that they disagreed about was the addition of a third chemotheraputic agent.  I guess there is a drug called Methyltrexate that is used sometimes to treat osteosarcomas.  Apparently it is only used in the United States and here only on children because they have better abilities to recover.  It is given in the hospital and has to be very carefully monitored.  As soon as your blood level reaches a certain point they have to immediately give a "rescue drug" and then keep you in the hospital for another 24 hours on high volumes IV's while they try to flush it out of your system.  Sometimes it ruins the kidneys.  He said that normally it wouldn't be considered for someone my age but because my health is much better than normal that they thought I might tolerate it.  I knew there had to be a downside to all that running.  I asked him how much it would improve my chances and he said, "We don't know, your cancer isn't well understood"  I asked him what we should do if our local hospital didn't have the equipment to monitor it that closely and he said "Oh, I wouldn't do it then".  Later he called me back and said he had talked to another doctor and they thought I really should try it even if it meant going up to Salt Lake for treatment.  Needless to say, we left a bit confused.  If I choose to add methyltrexate then I will have chemo every week for six months.  (Regular chemo week one, methyltrexate week two and three, then back to regular chemo)  I guess this is another of those things that we are just going to have to pray about.  God knows what is best and he has been pretty good at giving us answers lately.

The doctors appointment went longer than expected.  We jumped in the car and ran for the airport.  We were the last ones to board the plane.  On the way home we just happened to be sitting next to a patient and friend who had a serious accident a few years ago and had to have his jaw rebuilt.  He has a bike chain in his jaw just like mine and is also permanently numb just like I will be.  He was super nice and as we visited it just brought peace to my heart to look at him.  He looked absolutely normal and said that it really is no big deal.  Another little tender mercy.

When we got home our kids had made banners and were all sitting in front of the garage waiting for us.  Apparently Elizabeth had been telling Shanelle, "This is worse than waiting for Christmas."  I can't describe how nice it was to hug and kiss our children again.

Well, I plan on taking it pretty easy this week and then next week back to work.  We meet with the chemo people on Monday to start making those plans.  The journey isn't over yet.  A sweet patient brought me an engraving that said "Each day is a gift".  That is how I am living my life now.  In the hospital  when I was meeting with one of the surgeons I told him that I had been given a blessing where I was promised that I would live to see my grandchildren and great grandchildren.  He didn't say much at the time.  When we met with him again on Friday I was asking him what my chances of survival were.  He just looked at me and said.  "I never talk about statistics because they are nearly always wrong.  I have people who shouldn't live who do and those who should survive who don't.  You just keep thinking about that promise that you were given that you would live to see your grandchildren and you will be just fine"  I think I will go with that.

Sunday, October 30, 2011

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.

Monday, October 24, 2011

Before you can run, first you must walk

videoI had JoLynne and the kids take videos and pictures along the way partly so that when I get discouraged I can look back and see how much progress I have made. The first video was taken on Wednesday, 2 days after surgery. I think it should count as my 12th marathon. The second was taken 7 days after surgery or today. God continues to be good to us. video

Sunday, October 23, 2011

Hey, I'm alive!

Well, I'm sorry about the short entry last night. I was completely exhausted but thought that I had enough energy to write about one sentence. Getting my wedding ring back was the most important thing that I could think of. JoLynne and I have been married 28 plus years. I don't think in all those years I have been without my ring more than a few hours. She wore it for me while I was going through all of this. As she put it "It will be safe here and look, it's really close to mine."

I really appreciate Shanelle keeping everyone posted while I was indisposed. She is a sweet daughter in so many ways.

I am so appreciative of each of you for your love, your prayers and your faith. I believe that God hears and answers prayers. Sometimes things don't turn out just like we would like them to, but when we really pour out our hearts to God, things do work out. In the bible dictionary, under prayer, it says:

"As soon as we learn the true relationship in which we stand toward God (namely, God is our Father, and we are his children), then at once prayer becomes natural and instinctive on our part. Many of the so-called difficulties about prayer arise from forgetting this relationship. Prayer is the act by which the will of the Father and the will of the child are brought into correspondence with each other. The object of prayer is not to change the will of God, but to secure for ourselves and for others blessings that God is already willing to grant, but that are made conditional on our asking for them. Blessings require some work or effort on our part before we can obtain them. Prayer is a form of work, and is an appointed means for obtaining the highest of all blessings."

I believe that statement.

This has been an amazing week. Shanelle has shared much of what has happened. There are some things that probably shouldn't be shared. Suffice it to say, we have felt and seen the Hand of God and I have never felt that I walked this path alone.Yesterday I was discharged from the hospital, ahead of schedule. The original plan called for 7-10 days in the hospital. I think we are basically on the "custom plan" schedule now. The tracheotomy tube came out a day or two early. By the way, for any of you who may have had those in the past, I really apologize for not showing you more compassion. All I can say is "WOW AND YUCK". The NG tube that allowed them to feed me through my nose to my stomach came out Friday, 10 days ahead of schedule. One of the older nurses told me that she had never seen one come out in less than two weeks in a case like mine. All the rest of the pumps, tubes, IV's, and cast came off Saturday Morning. They then told me that I could be discharged early if I wanted. It helps to have my son in law Mike here, he is an ICU nurse for Utah valley and a darn good one. Or maybe I was just so dang grouchy they would do anything to see me out of there. That is quite possible. I was thrilled to be discharged. Oh, and JoLynne gave me back my wedding ring! I was so grateful for so many kind, knowledgable doctors and nurses who took care of me. Many of them had the opportunity to hear my testimony. I plan on sharing that more often.

There has been a lot going through my mind these last few days. I believe I will survive this cancer. I have been given another season in my life to see what I will do. I try to think of what I can do better and what the Lord wants me to learn from all of this. My nights have been largely sleepless as my mind races in circles. Friday night sleep wouldn't come. At about 3:00 am I finally sat up in bed and said, "Hey Heavenly Father, are you there?" I had that warm feeling that he was so I said "Are you having trouble sleeping too?" Sometimes I wonder why he doesn't just zap me and get it over with. Anyway, we had a good talk during that night.

(The view out our windows)

Well, this is too long. JoLynne rented, (for $80 a night) a beautiful house that looks out over the river. That woman can find a bargain! I hope she didn't choose me because I was cheap. I prefer to be considered "a good value" We will be here until Oct 31 for a few follow up visits but mostly to make sure I don't have complications that need to be attended to. Thank you again for all your love and support. We look forward to being home.

Okay, God must think my faith is weak or that I need constant reminders. JoLynne just called me over and pointed out the plaque hanging on the wall here just as you enter the door.

Saturday, October 22, 2011

Thursday, October 20, 2011

Pathology

The pathology report came back last night. The tumor is still defying all conventions. They have had all of the pathologists that they can think of look at it, and they are all quite puzzled. The tumor shows characteristics of being benign but also of being a high-grade sarcoma. After multiple opinions, the pathologist have finally made their report. The internal portion of the tumor has been classified as a high-grade osteosarcoma because the nuclei of the cells are highly malignant, but the external encapsulation has been classified as benign. So it is an encapsulated high-grade osteosarcoma. The thing is, high-grade sarcomas are never encapsulated. They have never heard of this happening before. High-grade sarcomas usually are invasive into all of the surrounding tissues and can never be removed completely cleanly. But because of the benign like encapsulation, the tumor removal was completely clean. All the margins were clean and all of the lymph nodes. It is almost as though the encapsulation grew around this tumor to protect him from it.

We have been joking that the pathologist didn't know how to classify the tumor, because it is a miracle and they have never seen this kind of miracle tumor before. I'm pretty sure they couldn't write that on their pathology report though. It would be pretty funny to see a pathology report with "miracle tumor" as the classification.

So now the doctors are trying to decide what to do about it. Last night radiation was on the table, but we just heard from Dr. Foote, the radiation oncologist that they have officially decided not to do radiation. The surgeons don't want to do anything because it was completely clean and came out like a benign tumor. The medical oncologists are talking the possibility of chemo right now, but there is no decision about that yet. We think it might take a few days and several more consultations until there is an official decision about what to do going forward.

In the meantime, my dad is healing well. He is progressing much more rapidly than scheduled (due to all of your prayers which are being answered by our gracious Heavenly Father I am sure) and all things considered, he is feeling quite well. This morning they removed his tracheotomy which he is so grateful for. He is talking again, and has been up walking quite a bit with a walker. He has made four laps around the nursing station which adds up to about 200 feet total- well on his way to his next marathon.

Here's a picture of him with his metal tracheotomy. I think he looks like a borg. But he looked like a storm trooper with this plastic one the day before, so he is just working on emulating his way through several great sci-fi shows.

Tuesday, October 18, 2011

He's awake

This photo was taken right after my dad woke up from his surgery. He wanted to say "Thank You" to all of the people that have been praying for him and supporting him but couldn't talk yet, because of the tracheotomy, so this was his creative solution. My mom had just told him the good news about how well his surgery went. He was so happy to hear about how well it went and wrote on the board that it was a miracle!

His facial nerves were all swollen from surgery, so his facial muscle function was not good, but that is him trying to smile. He'll be back to smiling normally pretty soon here.

He also had a great surprise on top of the miraculous surgery. Seth surprised us all by flying in from China (where he is in school studying for year) to be here with him. Seth called my mom and I around 7 pm to ask about the surgery and then nonchalantly asked if anyone could come and pick him up from the airport. We were so surprised and of course I ran up to the airport to go get him. My dad was extremely surprised and thrilled to see him, and kept asking if he was hallucinating. (he was on a lot of medications so hallucinations were a distinct possibility.) It is great to have Seth here.

He is doing very well and seems to be recovering quickly. He has figured out how to talk a little bit with his tracheotomy tube in so we have been able to talk to him a bit today. He also got up and walked around a bit with a walker this afternoon - after they spent 15 minutes unhooking lots of tubes, and drains and machines. He will be back to running in no time at this rate. Minus all the equipment, he should be pretty fast!

He is so grateful to everyone, but most grateful to Heavenly Father for watching over him and is looking forward to coming home in a a couple of weeks.

Monday, October 17, 2011

Prayer works


The fasting and prayers all of you have been offering have paid off today. My dad is in the recovery room right now. The surgery couldn't possibly have gone better. Thank you to all of you for praying and fasting for him. God really does answer prayers.

Now that we have that most important point out of the way, onto the details for those of you that are interested. The tumor ended up being encapsulated and we think they were able to get clean margins (which is cancer speak for they were able to get all of the cancer out. We are learning way too much about cancer terminology through all of this.)

They also were able to save some of the nerves that they thought they were going to have to take, which is wonderful. For those of you in the dental/medical field they were able to save all of V3 except for the inferior alveolar nerve and kept the facial nerve intact. He will have a droopy face for a couple of months as the swelling in the facial nerve goes down but he will recover all of that nerve function. His lower right lip will be numb, but that's ok. He will just have more sympathy for all of his patients that he inflicts numbness on all of the time.

The reconstruction went beautifully. They did not need to take as much bone as they were planning on. They saved the angle of his mandible and did not have to take any of his maxilla so he will still look like himself (he'll just have an awesome scar too. Sweet! He'll look like a tough pirate! Scars are manly.)

The pathology is still not back. :( This tumor is being ridiculously difficult to type. But they say they think it is benign or a low grade sarcoma, but, being very conscientious and careful pathologists, they say they are unwilling to say that definitively yet. So we think he will likely not need any chemo or radiation. Pathology will probably take a few days more.

He did get a tracheotomy and will be unable to talk for a few days until that comes out. So we will be using sign language and can finally make good use of the ipad we brought for something besides crossword puzzles.

They reconstructed his jaw with bone from his right leg. The graft went really well and he should recover fine and be back to running marathons in enough time for the rest of us to train for one to run with him.

We are so happy with the surgical outcome today. We have been so blessed as a family. Thank you again for all of the love and support. We really appreciate it.

-Shanelle and JoLynne

Surgery Day

Surgery started at 9:20 am CST. We got to the hospital at 5:30 this morning and then spent several hours getting checked in. Eric is feeling very at peace and ready to get this tumor out. The surgery is expected to be about 12 hours. We are feeling pretty calm on this beautiful sunny Minnesota day. We get updates every two hours about how the surgery is going. We'll update the blog again tonight, when he is out of surgery. Thank you all for all of the love, support, and prayers. We feel very blessed.

Sunday, October 16, 2011

Ready for a miracle

Just arrived at the hotel in Rochester. Surgery is at 6:00 am tomorrow. I feel calm, yet another blessing.

Most of our sweet children traveled to the airport to see us off. Boy, I'm going to miss those kids for the next two weeks.

Thank you everyone for your prayers. I have had so many expressions of love and concern. They make me cry, but the good kind of crying. I am so grateful to be surrounded by such good, wonderful people.

I plan on sleeping tomorrow. I am going to be fine. Please remember my wife and children in your prayers. I worry about them.

Shanelle has promised to post updates to this blog. I think if I were to post anything the next few days it might be a little too entertaining. Thank you again. I appreciate you.

Saturday, October 15, 2011

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.

Friday, October 14, 2011

"I believe, help thou my unbelief"

Today was a harder day. It was great to be at work but emotional too. It is hard to look at my patients and know that I won't see them for a while. Many of them were tearful which made me tear up too. It doesn't take much these days. One sweet patient offered to help JoLynne and I fly back an forth with her frequent flyer miles, two of my friends who are dentists came up and offered to help with anything I needed. I am surrounded by wonderful people.

Early in the day I received several letters from doctors at Mayo written to our insurance company to help us in our petition for coverage out of network. I know the letters were trying to paint a worst case scenario so that insurance will pay but it is hard to read things like "high possibility of morbidity or permanent loss of function" or "High probability that this case will require postoperative chemotherapy and radiation". It may be true but I don't like thinking about it. Later the lead surgeon who will be operating on me called to talk about my pathology report. It is frustrating to us all that we don't have clear pathology. He felt very strongly that we need to operate now because of the size and location of the tumor. Sometimes they will use chemo first on osteosarcoma but he felt that we just can't take that risk. When I asked him what we will do if the final pathology shows it to be a high grade sarcoma he said "If it's a high grade tumor then we will give you four courses of chemotherapy over the next year and radiation too if we can't get clear borders." Then he told me an unpleasant story about a case last year involving a sarcoma. Yuck, I don't like hearing stories like that. Telling my office staff goodbye was hard as well. They are more than employees, they are my friends. I had some other scary emails too which I quick deleted so JoLynne wouldn't see them. By the time my friend who is covering my patients came in to talk I wasn't doing so great. I felt bad that he had to sit there and watch me cry. It was just a lot to deal with in one day.

By the time I got home I felt emotionally drained. My sweet JoLynne was gone but she got home about 15 minutes later. Somehow she always know the right thing to do. She just held me in her arms for several minutes. I don't understand it, but somehow that seems to shield me from my problems. I can understand why our children always wanted her to hold them.

I know that we are doing the right thing and that Heavenly Father has helped us every step of the way but it's still scary and it's hard not to think about "what if's". I feel like the father in the new testament who wanted his child healed by the Savior. When asked if he believed he said "I believe, help thou my unbelief." I wish my faith were stronger.

Since this whole thing began I have had a thousand thoughts running through my mind. On hard days they move so quickly that I can't even process them. There has been one thought that has come back over and over. Right after I heard from the oral surgeons that something was wrong I was driving home from BYU and having an avalanche of thoughts and emotions. At that point I didn't even know it was cancer but that thought had certainly crossed my mind. In the middle of that storm of thoughts the words came into my mind, "Be still, my son, and know that I am God" At the time I thought, "what kind of reassurance it that? That doesn't promise me anything." But for some reason those are the words have come back into my mind over and over. I just need to "be still" and watch God's hand direct what happens. I believe that, I just need a little help on my unbelief.

Thursday, October 13, 2011

Up, Up and Away...


IT IS SO NICE TO BE HOME! Even if it is only for a few days.

Our last day at Mayo was spent mostly in running around from doctor to doctor trying to gather letters to help us convince our insurance that they should pay something on this surgery. The doctors were all willing however some of them wanted to wait for the biopsy so that they could speak more to the point. We went up to visit with the people in the business office about our bill. JoLynne had moved funds around various ways until we had nothing owed on our credit cards. We then maxed out all three credit cards and paid a part of what we will owe on Monday. When we get home we will pay off the cards and then max them out again on Monday. Hey, we might as well get some frequent flyer miles out of this, right? We left for the airport with plenty of time to spare so we detoured out to some small towns along the way. The weather was overcast and the colors breathtaking. Sometimes I wonder if you look through new eyes after you have had a life threatening experience. I feel like I am looking through new eyes. The flight home was uneventful. The tumor is pressing on my inner ear so it is very hard to equalize the pressure when the plane goes up and down but I made it through. We finally arrived in Salt Lake around 11:00. Shanelle and Mike were kind enough to meet us. We arrived home at 12:30. The kids were all asleep. We hugged and kissed them anyway. Funny Spencer, when I went down to kiss him his eyes popped wide open and he threw his arms around me and hugged me and hugged me, telling me how much he had missed me. In the morning he didn't remember any of it but I do.

Today I was back to work. It was so nice to be back treating patients again. I love being a dentist. I have to admit I was feeling more compassion as I poked my patients with needles. Part way through the day my surgeon from Mayo called to tell me that pathology was finally back. The pathology team simply couldn't put a name on the tumor, so they gave it a descriptive name, "Fibrous, mixoid tumor" and then stated that they didn't feel they could give a full diagnosis until the full tumor was resected. However, they conjectured that it was probably a low grade osteosarcoma. Sometimes osteosarcomas are treated with chemotherapy first to try and shrink the size so I asked the surgeon how he felt. He said that because the tumor was so large and because we aren't even sure if it is an osteosarcoma, he thought it would be too risky to try chemo first. In his words "If it grows much more you will be inoperable. We can't take that risk" So, I guess surgery is on for Monday.

I only worked a half day then JoLynne and I went to meet with a ENT oncologist in Salt Lake. He is very well respected here and abroad. I told him that I needed someone to follow up with me after my surgery and that we were going to be treated out of network so I needed a letter stating that I would have a better chance of success at a bigger facility. After reviewing the CT scan he agreed completely. He felt that Mayo was probably my best choice and said he was glad to write a letter to that effect and also to take care of me after. That was another blessing. One day at a time. I can't help but think that if God is going to take care of all these little things, He will surely take care of big things like surgery. I am a little nervous but I trust my Heavenly Father.




Wednesday, October 12, 2011

Super powers...YES!

Well, it was a busy day yesterday. So busy I had no time to post a blog. Pretty much we ran from doctor to doctor all day. I think perhaps it is better to simply run from doctors. Funny I should say that. I wonder how many have thought that when they saw my name on their calendar. Anyway, the coolest thing today was that they filled my veins with radioactive isotopes. The syringe was really big and I shouldn't have looked but I did on accident. I really wish I had taken a picture but that would have been awkward. I asked the guy if I was going to get any super powers or anything. The people in Minnesota are super nice but they are kind of stoic. He just looked at me and said, "My guess is that you'll just grow another toe or something" Dang it! I'm still hoping for something better. He's just a technician, I'm pretty sure he doesn't know about all this stuff. I'm just going to spend most of my time thinking about how I am going to hide my secret identity from JoLynne. I think I will hide my suit under the bed. She never looks there.

The reports from our biopsy were still not back on Tuesday. That was bad. The good news is that when the doctor called them they said that they were having a hard time putting a name on the tumor but it seemed "benign like" but that they weren't willing to call it benign yet. That is a miracle and an answer to prayers. Almost nobody has said the "b word" till now. We like the sound of it. It wouldn't alter the surgery but would greatly improve the chances of not spreading and might keep me from having to have radiation afterwards. It's too early to know all of that but it is something nice to hope for. Everything is a go for surgery on Monday. We plan on traveling home Wednesday night and spending a few days with our kids. I am hoping to get two days of work in there and a doctors visit or so. (It's amazing how addictive those can become). We will fly back out on Sunday and be here two weeks. We are planning to return home on October 31, just in time for Halloween. Were pretty sure that this year I am dressing as Frankenstein and JoLynne is going to be bride of Frankenstein. Our neighbor suggested Beauty and the Beast. I guess that would work too.

I can say, without hesitation, that every day we have seen miracles. Tuesday was certainly no exception. While we looked at the MRI with the doctors, we were so grateful that the tumor had not entered key structures. It could have easily encircled my carotid arteries, that would have been fatal. It came close but between my carotids and the tumor there is a beautiful little layer of fat, a perfect surgical border (JoLynne says I have no fat, now I have proof). It could have grown up the foreman oval, a small tube leading to my brain. It came close but it didn't. As we looked at the MRI we could see a wonderful border all around the tumor. That makes us very happy and we feel SO blessed!

We had no idea how much this was all going to cost. That has been a big worry. Our insurance still hasn't agreed to pay anything. (we are working on that). Mayo wants a check for the whole amount before surgery starts. Yesterday they handed us the estimate and it was much less than we expected. We called our financial advisor to see what money we could get to quickly. He told us that he could liquidate our IRA's almost immediately without penalty because of the medical emergency and when he told us how much that would give us it was almost exactly the amount that Mayo had just told us that we would need a check for. I'm sorry but I just don't think that is a coincidence. Heavenly Father has been so good to us.

If by chance you should see someone swinging through the air on thin strands of silk (maybe dental floss) on Halloween don't be surprised. An extra toe, Bahh, don't these guys have any imagination!

Monday, October 10, 2011

No biopsy but....

Well, today was a busy day. Lots of doctors. Unfortunately the biopsy results were not back yet. They promise they will be back tomorrow. Apparently, on these weird ones they like to have multiple pathologists read the slides to avoid errors. We did however have the MRI. The good news was that the tumor had not grown too much, at least not that we could tell. It was more extensive than I knew about. It wraps over the top of the mandible and around the back as well. It is close to important structures but not in them yet. There is a chance it could have followed the nerve pathways up into my brain but it hasn't. It also could have invaded my carotid arteries and it is close but no invasion. So, that was good news. The doctors are concerned however about how close it is to everything so they felt it was best to go ahead and schedule the surgery. Because of the situation they moved us up on the schedule to October 17th, or a week from today. The two lead surgeons will be Dr. Eric Moore (I like his first name) and Dr. Arce. They may need to bring in a neurosurgeon as well if the base of the skull has to be removed. As of right now the plan is to remove the upright part of my mandible on the right along with the salivary glands and some of the deep bones of the skull. Many of the muscles on that side will also have to be removed. They tell me that they can rebuild me using one of my leg bones and that I will look great. That is a little hard to believe since I don't look that great right now. Oh well, modern medicine is amazing. They promise me that I should be able to run again if I am patient and I am the patient so that means I will run. Probably about 7-10 days in the hospital and then home. Chemo and radiation might still happen, it depends on the cancer type.

I sat and listened to all that and I should be scared spitless, (especially since they are taking my saliva glands) but I am surprisingly calm. It's hard to understand. Either I am crazy (likely) or all those prayers and fasting are really working. I just feel like I am going to be okay. And, as JoLynne pointed out, I am going to have the best halloween costume ever this year!

Sunday, October 9, 2011

Graffiti from Heaven

Today was a wonderful Sunday. We went to church with Dr.Robert Foote. Dr. Foote is the head of radiation oncology here at Mayo clinic and seems to be connected to me in more ways than you would expect. When I was first diagnosed I contacted a friend of mine who is a recently retired oncologist and he told me that his best friend was in charge of oncology at Mayo clinic. Within less than an hour we were given Dr. Foote's email address and within three hours of my sending him an email he had called me back and told me that he was already consulting with others about my case and "When can you travel?" Later I found out that Weldon Whipple had known him well when he lived here and had served in the church with him. Dr. Allen, who Marie Smith works for is close friends with him and called him up to tell him that I was coming and to take good care of me. Then just before we left my sister Shauna called up to tell me that the cardiologist she works with is Dr. Foote's brother in law. He is also the Stake President here in Rochester. In my mind I'm thinking "Okay, enough already, we will go." Anyway, yesterday I sent him another email telling him that I would like to meet him in person to thank him since I believe he has been coordinating my care behind the scenes. He replied back and invited us to church with him and told me that he had changed my doctors visits on Monday so that he would be attending to me personally. It was nice to finally meet him. He seems like a fine man.

After Church JoLynne and I decided to drive down to La Crosse. One of the nurses had suggested that the drive was beautiful and that it would be fun to look at the Locks on the Mississippi river. She was right, the drive was spectacular. In La Crosse we found a park along the river to go walking. JoLynne suggested that we sit on a bench that looked out over the river. We walked up and to our surprise found that the bench we had chosen had graffiti on it. (the only graffiti in the park by the way) The message seemed a little more than appropriate to my present situation. I turned to JoLynne and asked "Does that look like God's handwriting to you?" Either He is being less subtle in my life now or I am paying a lot better attention. Maybe both.

Tomorrow will be an important day for us. We expect that they will have the biopsy back so that they can finally tell us exactly what we are fighting. They will also have the MRI back which will tell us how much the tumor has grown and how complex the surgery will be. I know that God is in charge but I am a bit nervous. I keep thinking of the scripture that says "I believe, help thou my unbelief". I just need to remember how much divine attention we have had thus far. God is in charge! I believe my ward and others fasted for me today. Thank you for your faith and prayers. I love and appreciate you.


"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.