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.


Friday, October 7, 2011

Call me "Pokeman"

Another busy day at Mayo. Every time I turn around someone wants to stick something sharp in my body. Oh well. This morning I went in for an MRI. The nurse told me "lucky you, your'e scheduled for a double session". I had never had an MRI before, it was interesting. Basically they squeezed my head into a soft kind of vice then pulled a metal cage over my head and then slid me into a very small, noisy tube for about an hour and a half. I wondered if it would make me claustrophobic but it didn't really. They told me to stay awake and not to swallow. Of course as soon as they say, "don't swallow" all I can think about is swallowing. As it turned out there were brief moments when they allowed me to swallow. They just wanted me to hold my head really still to get the best possible images. Staying awake wasn't too easy either. Basically whenever I am horizontal I always go to sleep.

We were really hopeful that we would be able to get in for a biopsy today. The earliest appointment that they could find was on Tuesday because it had to be done in a CT scanner by a nuero-radiologist. Anyway, we called as soon as they opened and they told us what we had already been told, "we're already fully booked" but the lady was very nice. She told JoLynne, "Let me go talk to the doctor and see if he would be willing to stay longer and do one more procedure. A few minutes later she called back and and said that the surgeon was happy to stay longer for us. Yeah! Who would think I would be so happy to have someone drill a hole in the side of my head. We just really felt like the sooner we had a biopsy the more meaningful our discussions would become. The results should be back on Monday we hope.

They had to do a IV for the MRI. Right after that I was scheduled to have more blood work. (I still can't figure out why they want more blood every day) I suggested to the technician that he leave the needle in for them to draw blood. He just laughed and said "Phlebotomists are evil people, they always want to stick you with their own needle". He was right.

At 10:00 we ran over to get the biopsy. Everyone was super nice and it hurt less than I expected. It is really strange, after the biopsy my face feels different. Suddenly my mouth moves more freely side to side and I feel less pressure in my ear. I wonder if there" was a lot of fluid pressure built up in the tumor that was released when they drilled into it. We went out to eat at an Italian place after and I was still numb and not feeling much. Suddenly JoLynne noticed that I had blood running down the side of my face and filling my ear. She made me trade places at the table so that the waitress wouldn't have to see the grossness. Lucky for me I was eating pasta with a red sauce. They probably just thought I was a lousy shot with my fork and stuck pasta sauce in my ear.

This Sunday is fast Sunday. JoLynne said "Do you think we should fast?" I told her, "sure, why not, with all these procedures I have fasted like five times this week. I'm kind of getting used to it." Shanelle told me "no way dad, it's not fast Sunday for you, it's Fat Sunday" She is convinced I need to gain weight before surgery.

We did lots of reading today about mandibular reconstruction using a fibula bone from the leg. Our neighbor wondered if that would result in my running off at the mouth. He is probably right. It sounds like fibula reconstruction is the gold standard. One paper related that one transplant patient had run a marathon after the procedure. Maybe I will be number two.

No procedures for the next two days (weekend you know), I think my arms will appreciate being needle free.

Thursday, October 6, 2011

D&C 112:10

Frequently when we were kids we would go exploring caves with candles as our only light source. I don't know if we did it because we thought it would be cool or because we didn't own a flashlight. Either is possible. Anyway, candles don't illuminate very far. Mostly you can just see what is immediately around you and a little more. I guess that is how I feel about my life right now. It seems that God illuminates my path just far enough to keep me from tripping but not far enough for me to see the whole path. I would really like to know if there is a bear or a drop off ahead but I just can't see that far. Maybe he does it for my sake, knowing that it is better for me to only have to look a little ways and not become overwhelmed with challenges yet to be faced. Like it or not, I am learning about living by faith. I am grateful that in the small illuminated area I continue to see God's hand quietly leading us along.

Last night we arrived at our hotel at 2:30 in the morning. We had an appointment at 6:30 am at Mayo clinic. Not a lot of time to sleep. Because of a sweet Stake President from years ago JoLynne and I always read our scriptures before going to bed, even if it is just a few verses. (Thank you President Cole). Last night we were exhausted, so I just randomly opened the scriptures on my iPhone and it opened to D&C 112:10. It says, "Be thou humble; and the Lord thy God shall lead thee by the hand, and give thee answer to thy prayers" We both lay in bed and cried.

This morning we got registered at the hospital then had more blood drawn. (My arms are beginning to look like I may have a substance abuse problem.) We then met with an oncologist. She was very nice and when we talked about why we were traveling for treatment she said "That is a no brainer. When you have a cancer this rare you need to be in a large facility" We next met with a Dr Arce. He is a dentist/oral maxillofacial surgeon/MD who completed a fellowship in oncology. He was very helpful. I felt like he was looking at me as a whole patient, not just at my tumor. We talked a lot about reconstruction and what would last the longest so that I wouldn't have to go through surgery again in that area. He felt that the best way to rebuild my jaw was to use one of my leg bones, the fibula. I told him that I loved to run and he said that they could remove just the middle part of it and that, with time and patience, I would be able to run again. Apparently, the fibula must not be crucial to walking and running. Near the end of the appointment his head resident surgeon came in and introduced himself. He is from Utah and plans to return there this next year. That brought us a lot of comfort to know that one of the surgeons who operated on me would be moving back to Utah and would be able to take care of me if I have post surgical complications. When we got back to our apartment we had several calls from other surgical friends who helped us to lay some of our other fears to rest. We feel like little by little, things are falling into place.

Tomorrow they will be doing an MRI to map out my nerves and vessels in the surgical area. As the surgeon said "that little spot has a lot of real estate on it" Then more blood work (of course). We are scheduled for a biopsy on Tuesday but we are going to try and get in tomorrow if someone cancels. If not, were sure that things will work out as they should. It has been a good day. We are hopeful.

I wish I could just skip to the end and read the "happily ever after" part but I guess I will have to be content with my candle for now.

Sunday, October 2, 2011

Kindness, kindness everywhere kindness


Sometimes out of bad things comes good. God seems to work that way. I think that we all know that we have friends all around us. I am finding that, when faced with a serious challenge, just how sweet people are. There isn't a day that goes by that I don't have multiple expressions of love given to me. I awoke the other morning to find my door decorated with balloons and messages of encouragement. Anonymous, of course. On Friday, at my son Jarom's request, we went running. Over the years I would have to say that running hasn't been his favorite pastime. That morning we ran 4.4 miles. It was great. While running Jarom told me that as soon as I was better he would run a half marathon with me. Later in the day Shanelle and Mike came by with a gift certificate offering to run a marathon with me. Wow, getting better is going to be more work than I expected.



Conference has been wonderful. Why is it that it takes something like this to make me really listen? So many of the talks seem to have been written just for me. What a gift to hear God's voice through his servants.


We leave for Mayo this coming Wednesday and will be gone until the following Wednesday. Kind of like a vacation I'm guessing. I am anxious to have a full workup. The pain has come back and now seems to be pressing into my ear. I am ready to move forward and be healed. I see the Lord's hand every day in my life and I am so grateful that I know I won't walk this path alone.