Independence day.

So, JoLynne and I are back in Houston.  Today I finished my fifth day of chemotherapy and was discharged from the hospital.  The objective was to deplete my immune system so that tomorrow, when they implant the new genetically enhanced immune system, there will be room for them to grow.  Chemotherapy is not fun.  It makes me tired and nauseated and this time it has given me a lot of headaches.  But, if it accomplishes what they want then I am glad to suffer in order to gain the final desired result.

Tomorrow is a big day.  The actual infusion really only takes a short time.  From last time I remember that the injected cells had a golden color to them.  Oh and they smell like some weird fruit.  This dose will be much higher than what I was given last time.  In January when they did this they were still trying to determine how much could be safely given.  I was only the second patient so the dose I was given was very small.  The result of that and other experiments has shown that the maximum dose had no safety concerns.  So, this time I start at maximum dose.  I like that.  In addition, assuming that my tumor shrinks or even doesn't grow, they will give me another high dose every six weeks for six more times.  I like that too.  Last time when I was in this study my blood supply to the right side of my face was seriously damaged.  Many of the major blood vessels had been destroyed by radiation.  That makes it harder for the T cells to get where they are supposed to go.  Part of my reconstruction in Miami involved rebuilding the blood supply to my face.  Lots of fancy plumbing work.  I think that should also work in my favor.  But, mostly we are relying on the hand of God to direct the affairs of my health.  Only He knows ultimately what the outcome will be and when I am cured, I will gladly give the credit to Him.  He is in charge and for that I am eternally grateful.  We are ready to celebrate "Independence from cancer" day.

Red rover, red rover, send Eric back over

It has been wonderful to be home.  I forgot how nice our own bed is.

We talked with the doctors from Houston yesterday.  They have been talking with the immunotherapy board about what the next best step would be.  My tumor has at least two unique markers on the tumor cells.  One marker is called GD2 and the other is called HER2.  Our first time in Houston they designed cells to target the GD2 marker.  After reviewing the pathology reports they have decided that they would like to put in new cells aimed at the HER2 marker and see what that does.  The GD2 seemed to have killed about half of the tumor but the tumor could have died for other reasons.  We aren't sure.  The HER2 will be very similar to the GD2 except that they are going to give me 5 days of chemotherapy before injecting it.  The theory is that if you clear our some of your own T-cells that there will be more room for the injected, enhanced T-cells to expand and take over.  This will be the sixth time I have gone through chemotherapy.  Ughh...   We will probably have to be back in Houston in about 2 weeks.

We knew that this might be an option so when I was in Houston last time I had them take blood and prepare the genetically modified cells targeting HER2 just in case.  So, the cells have all been engineered and are sitting in cold storage waiting to be injected.  Oh, another important difference in this study is that they will keep injecting more T-cells every 6-12 weeks as long as the tumor is responding.  I really like that idea.  T-cells, even genetically enhanced ones, don't live that long.  I love the idea of sending in fresh troops over and over until the job is done.

This same doctor did this same study a year ago without the chemotherapy.  You should understand that to qualify for these studies you have to have exhausted all conventional treatments.  In other words, there is no known cure.  The last time he did this study 50% of the patients were still doing well at the end of a year.  That doesn't seem that great but when you consider who they are working with it is really very promising results.

So, last night JoLynne and I went for a walk around the block talking through all this stuff.  It's a "hard pill to swallow", so to speak.  Knowing what chemo is like doesn't make it easier I'm afraid.  Anyway, we came home and were laying in bed.  I was cold and had a blanket.  JoLynne said, "What do you think Eric?"  I told her that I had a very distinct burning in my bosom  Then I pulled back the blanket and showed her the electric hot pad on my chest.

FaceTime

Well, we finally have a surgical date to reconstruct my face.  It will be April 17th in Miami.  We had hoped it would be earlier but it turned out to be complicated to schedule the operating room and all the surgeons at the same time.  So, April 17th it is.

I am really doing pretty well these days.  I even have hair.  JoLynne told me the other day my hair was pretty so I guess I was having a good hair day.  That's a nice change from a no hair days which is what I usually have.  So far it is straight and maybe a little more gray.  I think I earned it.

Most of my struggles these days are with pain.  Most of the pain is in the lower area of my jaw where all the tissue is dying.  We sincerely hope that when they cut that all out my pain will begin to improve.

I have been trying really hard to gain weight.  They need to take skin from somewhere and it seems my tummy is the most promising spot.  The micro vascular surgeon left me with a strong injunction to "Gain weight"  He wants me to stretch out that tummy so that he has more skin to work with.  I have never really paid much attention to what I eat but now I am being forced to.  I'm trying really hard to get 4000 calories a day.  It's harder than you might think, especially when it is hard to chew and swallow.  We have found that Costco vanilla ice cream has 650 calories per cup.  I can melt that and pour it in my tube.  Sometimes when I really come up short I just dump straight olive oil in my tube.  That has a ton of calories and it keeps you so regular.  When this is all done I may write a diet book "The olive oil diet miracle."  Who knows, it might be a best seller.

Cast off the anchor ropes, raise the sails!

Monday was my last chemotherapy ever I hope.  Only time will tell but I can hope.  I have been bald so many times now I have almost forgotten what I look like with hair.

As is often the case, the full impact of the chemo doesn't hit you until a few days later.  So, yesterday was a hard day physically.  I just felt run down from the moment I got up.  Everything hurt more and my wounds just wouldn't dry up.  When I have a hard day physically it makes it hard to have a good day emotionally.  They go hand in hand whether I like it or not.  I came home at lunch just dragging.  Sweet JoLynne got home shortly after I did.  I'm a little embarrassed to admit that I had been at home crying, but oh well.  JoLynne is amazing.  She never scolds me, just puts her arms around me and tells me "it's going to be alright, it's okay to get discouraged"  I don't pretend to understand why things are the way that they are but when JoLynne puts her arms around me I can physically and emotionally feel the stress flow out of me.  She has something magical about her.  I am so grateful!  The problems feel the same size but somehow I feel bigger with her there by my side

Ah, picc lines, so much

Today I feel much better.  I just woke up feeling better.  They took out my picc lines today.  After four months I was more than ready to be done with them.  It so so strange to have them pulled.  It doesn't hurt but the lines are pretty long.  They kind of just "reel" them out of your vein.

My treatment date in Houston has been moved up to December 29th.  The researchers called and said that my T-cells grew very nicely and are all done.  They have 12 batches of genetically modified T-cells sitting in the freezers, waiting to be injected back into me.  All that is lacking is the FDA to come and sign off on the batches and a free hospital bed.

May God's wind lead us safely there. 

With my picc line removal and the treatment date moved up I feel like a ship casting off.  "Cast off the anchor ropes and raise the sails"  There is something reassuring about being tied to an anchor rope but the reality is you never get to your destination until you lift the anchor.  Raising the sails has risk but the time comes for taking risks if you want to get anywhere.  I'm ready!

A time for inspired decisions

If this were a serial novel I think I would have lost my audience by now.  I would do more regular updates but I want to wait long enough that I have something of importance to say.  I guess that time has come.

I have just completed my third round of chemotherapy.  My energy level is up and down.  For that matter so am I.  I fainted again yesterday while walking to the kitchen.  Such an unusual feeling.  When I woke up, I was so disoriented.  I was laying on the floor of the living room, sprawled out and my first thought was "This is a really unusual place for me to take a nap"  Then I notice a few tender spots on my back and knee and couldn't quite figure that out then it finally dawned on me what had happened.  It's just weird.  I'm glad I didn't hit anything too hard.  I struggle to keep my blood pressure up.  JoLynne now has me wearing compression socks.  No more showing off those sexy legs of mine.  I have increase my salt intake which was already high.  I guess I will just start sprinkling water softener salt on all my food.  And, I am drinking more water.  I was already drinking about 8-9 glasses a day.  Now I slosh when I walk and I think I will invest in a second bladder so that I can stay in bed all night.

Thursday I had a follow-up scan to see what effect the chemotherapy has been.  Honestly I was expecting the worst.  When I first started chemo I saw immediate improvement but then some of the symptoms began to come back.  Trouble swallowing, speech impairment, the sore in the back of my mouth returning slightly.  Never to the point I was at in Boston but not perfect.  We picked up the results on Friday and they showed that the tumor was almost identical in size as compared to the beginning go of chemo.  We would have loved to have it reduced but, considering it's astronomical growth rate when I started I am truly grateful to have it not grow any bigger.  I will gladly accept that.  We meet with the doctor on Tuesday to decide what to do with that information.

family at the airport

About two weeks ago I was released from my calling in the Stake Presidency.  This has been a wonderful calling for me so there is some sadness when it comes to an end as expected with any calling that you love.  I have loved serving with President Roberts and Larry Myler.  They will always be dear to me.  I have loved the members of the stake, especially the youth.  They inspire me. I have loved helping people go to the temple of God and receive the blessings that can only be had there.  I have loved having inspiration in preparing my talks and lessons.  I feel like God made me something better than I am while  I served.

All that being said, when the president told me that I was to be released I felt a sweet confirmation that it was God's will and that brought me peace.  The president said that he felt that in his prayers that I would likely have to travel to find the final cure for my cancer.  I believe that statement was also inspired.

We hoped that chemo would be the final answer but always I thought that the cure would be found elsewhere.  With that in mind I and my wife and my children have spent a ton of hours combing over the internet looking at clinical trials that are applicable to my disease.  I have personally looked at over 400.  They don't speak english in their descriptions, so, even with my health care background, I often have to look up a lot of words.  Almost all of the trials are phase I, which means that the research is just beginning on a particular treatment.  A year ago most of these trials were not available yet.  We believe that God has preserved my life to this point so that an answer would be available.   I have now honed it down to about 9 trials that I think are promising.  Only God knows which of these will prove to be successful, but He knows!  I am doing all in my power to study them out and I have faith that God will show us the way that we are to go.  I had a sweet blessing from my former Stake President today and among other things he told me that God would reveal to us the path we were to travel.

Spencer and his mom

The other big event of this week has been the departure of our son Spencer on his Mission.  We saw him off at the airport early Wednesday morning.  He is such a good boy and we miss him already.  We are grateful that he has chosen to serve a mission though.  His life will be forever altered for the better.  He will be in training for 6 weeks in Mexico city then he will fly off to northern Chile.  I can only imagine the adventures and sweet spiritual experiences that await him.  In the meantime, it's mighty quiet here at home.

Round #2: Bring it on

Cool 1960 bike

Today I start my second round of chemo.  Goodbye appetite :( …   I can't complain, I have had a good five days which was a blessing.  I felt well enough tonight to go on a date with JoLynne.  We have a very old tandem bicycle, a Schwinn that my father bought in 1960.  Anyway, it still works and it's cool and retro.  We rode down to Utah lake.  It was great.

On Tuesday we went to see the infectious disease doctor.  He hadn't seen me in about 2 weeks.  He looked at me, looked at the mass in the back of my mouth and then sat down and said, in his Russian accent, "Doctor Vogel, your tumors are visibly smaller."  That was music to my ears.  I have felt better, better swallowing, less pressure on the side of my head, when I drink fluid it no longer shoots out my nose.  That was pretty annoying, by the way.  I asked him, "I have only been on chemo, 20 days, is it possible that they could shrink so quickly?"  His answer was "Well they grew that quickly, why could they not shrink quickly as well?"  I like doctor visits like that one.  Having my cancer respond to chemotherapy is such an answer to so many prayers.

Sometimes good things come out of bad.  I have a dear brother who I had little contact with for quite a few years.  Maybe because of my cancer we have reconnected.  He is a good man and has always been a champion for the underdog.  He came to visit last Saturday with his wife.  It was wonderful.  At one point in the visit he looked at me and said "I have been praying that God would take the cancer from you and give it to me"  For him those aren't just words, he would really do it.  It makes me a little teary eyed thinking about it.  I told him, "I wouldn't give it to you."

Well, we will simply continue to pray for a miracle in whatever form God chooses to send it.  We have faith that a miracle will come.

Joy and Hope

Well, this has been a challenging week and a wonderful week.  Life is that way sometimes.

John and Callie exiting the temple

Let me start with some good news.  This was the week my son John Eric Vogel married his sweetheart Callie Leigh Stettler in the Brigham City Temple.   This occupied most of the day on Friday.  I was concerned about my strength and ability to be a part of the events without becoming too tired but I was blessed.  One of my sweet nurses agreed to come early to the clinic to give me fluids and steroids so that I could feel better.  She met us there at 7:00 am,  We decided to drive our motorhome to Brigham City so that I could rest along the way.  My wonderful son Seth drove the whole way while I slept in the back.  It was like magic.  I climbed in the motorhome, fell asleep and when I woke up we were there.  Now I know why my kids like traveling like that so much.

My family, how blessed I am

The temple was just as you would expect, amazing.  We had a few minutes to wait while the bride and groom were coming.  I sat and looked at my sweetheart JoLynne across the room.  Thirty one years ago we knelt in a similar room at an altar of God and made covenants with each other and with God.  Where did the years go?  It seems like yesterday that the sealer stood and pronounced those words, "For time and for all eternity" over JoLynne and myself.  I felt like I was being transported through time.  I looked to my side at our older children.  I felt like my happiness was too great to contain.  The marriage ceremony was beautiful, simple and sacred.

Very creative car decorations.  Talk about green vehicle

Well, afterwards, a luncheon with family and friends and then a beautiful reception planned by Callie and her family.  I was tired and had to sit down at times but felt like the Lord gave me enough strength to get through.  I slept the whole way home again while Seth drove.  My cute little daughter Elizabeth, now 13 years old, came back and snuggled up by me while I slept.   They grow up too quickly.  I am grateful my daughter was still willing to snuggle up to her dad.

The next day I was pretty tired.  There was a lot to prepare here at our home for the open house.  Our dear friend and neighbor told us very firmly, I don't even want to see you out there.  She arranged for all the neighbors to come and clean up the yard and set everything up.  It was like an army descended on our home.  We are so blessed with good neighbors.

The open house was great.  I saw people who are so dear to me.  I am a pretty tearful guy these days and this was a tearful night for me.  A young man who I loved as if he was my own son come by with his family.  What a joy to see him with his children.  A dear former stake president who has prayed his heart out in my behalf.  So many dear friends.  You know, you can go through life collecting things, and we all do, and in the end they mean nothing for the most part.  But, the relationships we develop along the journey, those really mean something.  In my present situation that seems so clear to me.

Well, John and Callie got off on their honeymoon.  They were nice enough to text us when they arrived at their destinations which I appreciated.  What a wonderful adventure lies ahead for those two.  I can't even imagine.  I hope they are as happy as JoLynne and I have been.  That is saying something.

I wanted to be holy, just not this way

Well, regarding my health, it has been also good and bad.  I began chemotherapy about a week ago Thursday.  Ahh, chemo, such a joy.  Imagine a ballon.  Now imagine all the air is let out.   That is about how you feel.  No energy, no appetite, nausea, mouth sores, etc.  Oh well, it is a process to a desired end.  I had been having significant amounts of pain.  Even though I was taking some pretty heavy duty pain meds the pain still was effecting me.  I would wake up in the night just drenched in sweat as if someone had dumped a can of water over me.  Finally Tuesday morning, I got out of the shower and noticed that I was dripping from my face.  My face had been quite swollen.  Apparently the pressure built enough that finally the skin burst.  It wasn't pretty but my pain was almost completely resolved.  Later another small area burst and I saw further improvement.  I am now taking almost no pain meds and am pretty comfortable.  I have quite the wound on the side of my face but we will hopefully get into wound care tomorrow and have them help us to address that.  Saturday my son in law, a nurse practitioner, pulled out a flashlight and looked into the hole in my cheek.  Apparently you can see the bone and the titanium plates that were screwed in during surgery.  So, we will be very happy to have wound care involved in helping me to heal this wound.

In the meantime, I am working a little, not as much as I would like but as much as my energy allows.  I have a wonderful associate, Mike Merkley, really a gift from heaven who is helping me to take care of my patients.  JoLynne and I have moments of doubt and fear.  We don't know exactly where our path will lead.  We both still believe that God is going to work a miracle and that I will be healed.  We have this vision of us sitting on our front porch in a double wide rocker, watching our grandchildren play on the lawn.  We talk about that a lot when we get discouraged.

Our beautiful granddaughter

Today, my doubts seem less.  I sometimes wonder if it is the prayers of others that brings me that peace.   I do believe in the power of others faith.  I love and appreciate so many of you who have prayed for me through this whole long journey.  My nephew's son the other day came up to me and said, "Uncle Eric, we have been praying for you a long time.  Why are you taking so long to get better?"  Well, I don't know the answer to that question but I am grateful for the prayers.

Every day is a gift

I haven't posted anything for a while.  I guess the adage, "no news is good news" applies here.  Yesterday I completed my 20th radiation treatment.  That means I now have only 13 remaining.  February 27th will be my last day of treatment.  Monday I will spend most of the day getting my last dose of chemotherapy.  I informed my doctor yesterday that I would like this to be the last chemotherapy that I receive in my mortal life and I plan on having a long mortal life.  He just laughed and said that he would be okay with him as well.  It has been a journey.

Whenever I get discouraged I just think of all the blessings I have had along the way and it makes me feel better.  Radiation for the first two weeks was not too hard.  That is what they had told me to expect.  After two weeks the problems begin.  For those of you who have experienced head and neck radiation you understand what I am talking about.  Sores break out in your mouth and throat that make it hard to even talk let alone swallow.  Your taste buds cease to work entirely so everything tastes like straw.  Your saliva all goes away and that doesn't help the swallowing either.  By about 2 and a half weeks into treatment that is where I was at.

I am usually pretty good about dealing with pain but it was getting past my limits.  I don't take medications when I can avoid them but I was finding it necessary to take 800 mg of ibuprophen three times a day just to function.  Even with that it only took the edge off of the pain.  I should have been more proactive in addressing the mouth sores from the start but I wasn't.  I meet with the doctor every Wednesday.  I remember going in and expressing my concerns.  They were kind but didn't have a lot of good solutions.  I asked if there was any chance I could get over the sores and they said that they hadn't seen that happen.  They said I would be lucky if the sores stayed only at that level through the remainder of treatment.   They told me that I could have round the clock narcotics or possibly an NG tube to allow me to continue eating if things became worse.  My mouth looked like one big canker sore.  It felt like the sores were in my ear, throat and sinus as well but I couldn't see those areas.  I left feeling pretty discouraged.  About a week before I had made a few changes in my protocols in my mouth and throat care but so far it wasn't helping.  I really didn't want to spend the next four weeks on narcotics.  That night I went home and in my prayers I plead with Heavenly Father for an answer about what I should do.  There was a sense of peace but not much more.  Thursday I woke up with a slight decrease in pain.  This was the first time in a week that the pain was less instead of more.  I got up and took my ibuprofen.  This time it more than took the edge off,  I almost felt human again.  It felt like a miracle to me.  I was still in pain but it was manageable again.  I cried off and on all that day, tears of gratitude.  (I think my office staff think I am an emotional mess.)  I didn't need all the pain removed, just enough that I could deal with it.  I felt like that prayer had been granted.  The improvement continued through the next 6 days.  When I met with the doctors the next week they wanted to know about my pain levels and if I was ready to move to higher levels of medication.  When I told them that I was feeling better they were somewhat incredulous.  I am just grateful.

Well, two and a half weeks will soon be done with.  I am praying for a life free from cancer from this point onward.

We have been so grateful to be able to be home while I am receiving my treatments.  In January my sweet daughter Elizabeth turned 12 years old.  She was pretty excited.  It was a great day.  We only let our children have a "Friend party" once every four years.  This was the year for her.  She loves Dr. Who so she planned a Dr. Who theme party.  It was cute.  Our son Peter, who is preparing to leave on a mission to Spain went through the temple for the first time.  Words cannot express how I felt.  What  joy to be in the temple with him and all our older children.  I hope it is symbolic of a day when we will all stand together in God's presence worthy and full of joy.  Watching my grand daughter discover her hands and learn to sit up is irreplaceable.  I know I would have received great care at Mayo but I am grateful that the doctors at Mayo were willing to work with the doctors here so that I could stay home.  Every morning I wake up and think of each day as a gift from God.  None of us know how long our mortal journey will last.  We should relish every day.  Take time to enjoy a child's laughter, to watch a sparrow at your bird feeder, to enjoy the warmth of another person's embrace.  I am trying to live that way.

That "healthy glow"

Kind of "Sci Fi" don't you think?

The tanning salon

I have now finished one week of radiation therapy.  One down, five and a half to go.  It's kind of like a really high priced tanning salon.  You should see the healthy glow that I am sporting on my right side.  I think that I mentioned before that it was decided by the tumor board to give chemotherapy along with the radiation.  So, Monday morning I spent 6 hours getting chemotherapy and then a half hour getting radiation.  The chemotherapy agent chosen this time is cysplatin, the same one I had the first time around.  I am told that the dosage is less this time and they aren't giving me adriamycin at the same time so hopefully it will be less damaging.  Still, by Friday I wasn't feeling too great.  Saturday was worse and I went to bed early with a bowl by my side.  Sunday I seemed to feel better which was a blessing since I was supposed to teach at ward conference.  All in all, not fun but not as bad as last time.  The radiation makes me sleepy.  They say that will get worse as it goes along.  I'm also told that the oral side effects will worsen after the second week.  I guess it will cause mouth sores, trouble swallowing and sinus problems.  Oh well.

Life is great

Other than cancer drama, life is great.  Our little grand daughter just gets cuter every day.  She can now sit up on her own quite well for a little while.  She's also getting pretty good with her hands and moving things around.  It's great trying to get her to smile and giggle.  Peter is getting ready to go to the temple for the first time.  He had his final interview with the Stake President yesterday.  The Stake President told him "This is a great day for your parents".  Peter replied, "It's a great day for me!" and he is right.  He is counting down the days until he leaves for Barcelona on his mission.  Jarom continues to date a very nice young lady.  He brought her by for dinner yesterday and the whole family agrees that she is lovely.  Seth was just asked to come for another interview for medical school in Chicago.  The school is even paying his way this time, so all the better.  JoLynne is getting around better all the time on her healing legs.  It seems like her endurance is better and her pain is less.  Nobody has stolen our identity for weeks now and no pets have died so we are feeling pretty good about life.

People frequently tell me that we are in their prayers.  I just want you to know that we take that seriously and we are very grateful for your faith in our behalf.  I don't know how decisions are made in heaven but it can't hurt to have a lot of people pleading for you.  Thank you.

The end at last!

Friday was my last day of chemotherapy.  Seven rounds and twenty one dose later I am so ready to be done.  This last regimen started out somewhat easier but each progressive round has been more difficult.  This last round has pretty well knocked me off my feet.  With a few interruptions, I have slept almost 72 hours.  I could fall asleep again now but I am so sick of sleeping!  At the completion of chemotherapy they have a bell for you to ring signifying that you have finished your treatment.  Ringing that bell caused JoLynne and I to shed a few tears.  Everyone in the room cheered and clapped.  I wish that they could be done as well.  Someday somebody is going to figure out a way to treat cancer without chemotherapy.  That will be a wonderful day.

Sometimes you just need to laugh

Hope I won't need to call him too soon

So, the other day at work a friend dropped by to visit.  We served together in Bolivia as missionaries.  Honestly, I haven't seen him for nearly 30 years.  I'm not very good at keeping track of people.  At the time I was busy with patients so the receptionist didn't even tell me that he had come.  He did leave his business card which the receptionist gave to me at the end of the day.  I looked at the front side and saw his name then I flipped over the card and began to laugh.  I'm sure he didn't know the challenges that I am facing but it did make me laugh.  As a matter of fact, I chuckled about it on and off most of the day.

I am doing well.  Lately mostly I have just been tired.  I think I have brought tired to a whole new level for me.  The other night I was getting ready for bed, brushing my teeth, flossing and all that.  I was really tired so I laid down on the bed to finish flossing.  The next thing I knew I woke up with floss dangling from my mouth.  I had fallen asleep while flossing.  I think that may have been a first.

I know,  I need a new toothbrush

I think we can see the "light at the end of the tunnel".  This coming Wednesday I will begin my last round of chemotherapy.  I don't look forward to being sick again but at least this is the last journey down this dark road.  Thank Heavens!  In three weeks we will have another MRI taken and hopefully the tumor will show additional reduction in size.  They are going to give me a little time to recover from the chemo then off to surgery.  Right now I am scheduled for a surgery consult on December 10th and surgery either December 11th or 13th.  Unless something changes it will be a same day surgery.  It will be done at Mayo as a laproscopic surgery.  One tumor will come out through my nose and the second one through my mouth.  A few days after surgery JoLynne and I are going to meet our children in Florida and go on a Disney cruise.  We have never been a on a cruise before.  This will be the first.  All of our children are in the area and we decided to "splurge".  It will be good to be together, making happy memories.  In mid January JoLynne and I will move to Minnesota for 7 weeks while I undergo radiation therapy.  Nothing like Minnesota in February.  JoLynne asked what we are going to do during all day when  I am not receiving radiation treatment.  I told her "We'll just chill out".

"The bitter and the sweet"

Well, I am into my second round of chemotherapy.  I guess it shouldn't come as a surprise that things get harder as you go along. I guess I remember it being that way last time.

Last night was a hard night.  I was super tired and fell asleep around 7:00 pm.  I finally found my way to bed around 9:00.  By about 11:00 my stomach was churning like crazy.  Sweet JoLynne, in her wheelchair, was trying so hard to take care of me.  She got up and found the anti-nausea medicine and a "barf bowl"  I swallowed the medicine but promptly threw up.  We tried that a few times and then just kind of dealt with it.  By the time morning came around there was really nothing left to throw up and my stomach had started to settle.  Finally I was able to get to sleep.  I feel bad that I messed up JoLynne's night as well.  I was grateful that JoLynne had texted the Stake President the night before and excused me from meetings.  I was in no shape to be out.

In contrast to that, Shanelle and Mike brought by our granddaughter and let us babysit Saturday evening.  Little Vivian is so sweet!  It sure doesn't take any time at all to become attached to her.   I wasn't feeling the best but she didn't care, she just snuggled right up to me and fell asleep with me.  Sometimes when I am on chemo I have anxiety as well.  With that sweet little girl next to me I could just feel the anxiety leave my body.  What a blessing she is in our lives already.  I am grateful for her.

Last night "all the shingles blew off"

This time my chemotherapy has been MUCH better than last time.  Wow, what a difference.  I have still been super tired and dizzy and all that but I don't feel like I was run over by a truck.  However, my hair hasn't liked it too much.  Actually it caused my hair to fall out sooner and more completely than last time.  For the last couple of days it has been falling out like crazy.  Every time I touch it sections were falling off.  By last night I couldn't stand it any more.  I sat down at the table and just pulled it all out by hand.  It was so loose it didn't hurt at all.  I guess it didn't look too good.  It made JoLynne cry and I was sorry for that.  So....back to bald.

You know, it has been a hard time in our family.  Between my cancer coming back and JoLynne's broken legs,  It hasn't been easy.  On top of all that, we were notified by the credit card company that our identity had been stolen while we were waiting for JoLynne's leg operation.  Finally, the night we got home from the hospital little Elizabeth came into the room in tears.  Her pet bird, Peeps, had died.  Peeps has been part of our family for 15 years!  I will be honest, at the time I thought, "You have got to be kidding!"  But time has passed, the bird had a very nice funeral, the credit card company is helping us fix the damage, JoLynne's legs are healing and I am doing quite well for a bald guy.  I have often thought back to the time when my son Seth and I were running a marathon together.  Seth was recently home from his mission and in pretty good shape but probably not marathon shape.  He really didn't train well enough.  In spite of that he finished in good time.  At the finish line he was really sick and not looking well at all.  After a few minutes, when he could talk he said. "Dad, I know what Hell feels like now."  Then the profound statement, "When your'e going through Hell, you just need to keep on running."  I have thought of that statement often.   Quitting isn't an option and brighter days are ALWAYS ahead.

And, speaking of brighter days, we now have what may be the most beautiful granddaughter ever born.  Words don't express how happy her arrival has made us.

We have wonderful neighbors.  One neighbor brought over a "Jazzy" scooter and our other neighbor allowed me to use his Segway.  JoLynne and I are riding again!  It's almost worth breaking your legs and having cancer when you get to travel like this...

Finally, the other evening there was a beautiful double rainbow.  It was so bright it almost looked unreal.  This was shortly after JoLynne had come home from the hospital so it was very difficult to get around, but with several of us helping, we managed to get her outside in a wheelchair where we could watch the rainbow slowly fade from the sky.  It was spectacular.  Afterwards I found myself thinking about the first rainbow and the trials Noah and his family had been through.  Wow, it makes my problems seem really small.  How sweet and tender for God to give him and his family the gift of a rainbow.  In their case it was a promise that God would never send another flood.  In our case it felt like God saying, "I am aware of you.  Look to me and your problems will fall behind you"

We love the temple!

We had the opportunity to go to the temple this evening.  Our son Jarom came along with us.  It is always so nice to be in the temple, especially with family.  It feels like coming home.  This trip had a special purpose, to try and get an answer about what we should do with chemotherapy.  One of the sweet things about the temple is that I seem to be able to get answers to my prayers more readily there.  This trip was no exception.  After careful thought and prayer both JoLynne and I received an answer, in the temple, that it is time for me to stop chemotherapy.

I have always found it more difficult to get answers to prayers when the matter I am praying about has such profound personal emotions associated with it.  It is hard for me sometimes to separate my personal feelings from answers from God.  The answer that we received in the temple yesterday was unmistakeable.  We are all relieved that I can begin to move on and regain my strength.  Already, on last Thursday my immune system and my red blood cells had begun to rebound somewhat according to the doctor.  My body seems to be coming back to life again.  I feel like I am waking up from a dream.  I still don't have the strength that I had prior to chemotherapy but I feel so much better than a week or two ago that the contrast is amazing.  I am so grateful to feel good again!

I have learned so much these last three months.  Perhaps in another post I will talk about that.  It's a little close to home still to talk about.  One effect of all this has been on my tear glands.  They just seem to work a lot more often than they used to.  Maybe my heart is softer or maybe I am just getting old and leaky.  I look at my wife and my children, I think about the many miracles that have occurred and my heart is full.   I am just so grateful to be alive!

The Provo temple.  Where JoLynne and I were married.   It continues to be a special place for us

Fortunate fortune cookie

We just returned last night from our trip back to Mayo clinic.  It was a good trip but fast.  This was a three month follow up visit with the surgeons and, of course, a chance for us to visit with our oncologist there and discuss my chemotherapy.

The visits with the surgeons were great.  They are thrilled with how I am healing.  They were very happy with the way that my leg bone has fused to the jaw bone.  They were thrilled to see the nerves of my face beginning to turn on again and they were relieved to see the wound on my leg beginning to come under control.  We talked to the main surgeon, Dr. Moore, about what he thought about the question as to whether or not we should continue chemotherapy.  He didn't really give us an answer but he did tell us that he was certain that he had clear margins all around the tumor.  He was certain that no tumor stayed behind in the surgery site.  I mentioned to him that my hearing seemed somewhat altered since starting chemotherapy so he ordered a hearing test.  It just so happened that I had another hearing test done just prior to the beginning of chemotherapy so that was useful for comparison.  The new test showed significant hearing loss in the upper ranges in both ears.  I had some loss from before associated with my profession and the sound of dental drills but the loss in the last 12 weeks is much greater.  The doctors informed me that this is one of the possible side effects of the chemotherapy I was given.  One doctor said that once gone, it would always be gone, the other doctor thought I might get some of it back.  The other day I noticed that I can't hear birds sing anymore.  That's kind of sad.

Our visit with the oncologist over chemotherapy was a bit less definite.  We had faxed all of my medical records to him last week.  He must have spent some serious time since we sent nearly 200 pages of records and he seemed familiar with all of them.  He shared the concerns of our oncologist in Provo.   I think it was obvious to both of them that if I were to continue on the regimen that I am on now it would probably take my life before I finished six rounds.  He said, "My heart tells me that you should stop chemo now but my brain thinks perhaps we could design a different regimen based on other drugs that you might tolerate better."  Apparently there is a regimen used in Europe that might have less side effects than the one I am on.  We talked about that for a bit.  He freely admitted that nobody knows for sure what to expect from my cancer since it has never really been studied.  They really don't know the chances of it coming back and they don't even know if chemo is effective against it or not.  They also don't know if there is even cancer in my body anymore.  What they do know is that if I start chemo again it will set back the healing of the wound in my leg and possibly allow another infection to develop.  This was a main concern for him.  He felt that another infection in my leg could be fatal.  When it was all said and done he said that the decision would have to be ours.  He told us he would consult with the other sarcoma specialists and with our doctor in Provo.

Today we went to visit with our local oncologist again, Brian Tudor.  We have come to have a lot of respect for him both as a doctor and just as a caring man.  We went through all the scenarios with him again.  He mentioned that my response to three rounds of chemo was more that what he expected out of six rounds on most people.  In his words "If three rounds beat you up that badly, I kind of think, if there is cancer in your body, it would have been equally brutal on your cancer."  Needless to say, he is inclined to have us quit chemotherapy at this point as well but he encouraged us to pray about it and find our answers with help from above.

So, here we sit, with some big decisions to make.  We don't want the cancer to come back but we don't want the risks of additional chemotherapy either.  We plan on going to the temple tomorrow and consult with the Lord.  He has been so good to us up to this point.  We hope and pray we can receive answers again this time.

Today a dear friend came by.  She said that just prior to my surgery she went to open a fortune cookie.  She was astounded to read the following:

It seems that God is writing messages in park benches, in fortune cookies and elsewhere as well.  We continue to feel His love and concern for us.

Chemo on hold

Today was to be the start of my fourth round of chemotherapy.  We showed up at the doctor ready and dreading but willing.  They took a sample of my blood, like always, and then we went to wait in the consult room.  Dr. Tudor came in and began the conversation with "You know, Eric, you are highly unusual".  Why do I always have to be weird?

So, my white blood cell count has continued low and has actually gone slightly lower since last week when it was too low to proceed.  Since it has been four weeks since my last treatment that is not what we would have expected.  In his opinion my body is not responding well to the chemotherapy and he wasn't comfortable going forward with the way things are going.  He knew that we were going to Mayo this next week and wants to wait and hear their opinion before doing anything more.  He then said that perhaps we should stop at three rounds and call it good.  We will have to see what the doctors at Mayo think of all that.  He then said that he thought it was divine inspiration that we chose not to do Methotrexate way back at the start.  In his words, "Had we done methotrexate, it is quite likely it would have killed you....okay, maybe I could have saved you but it would have been close".  For those who follow this blog you may remember that the doctors were split 50/50 on whether or not I should do methotrexate.  It was a hard call for us but we took our question to the temple and asked the Lord.  We received a very clear answer back then that we shouldn't do methotrexate.  It should be no surprise that Heavenly Father knew from the start what would be best.  I am so grateful that once again I have been divinely protected.

Cute little birthday girl

Well, after the doctor left I was dumbfounded.  JoLynne stood up ready to leave and I was just sitting there speechless.  I guess I had an expectation that I would need to suffer for so much longer and now I am being told that perhaps I won't.  I guess it is too early to know that for sure.  We will see what they say at Mayo.  So, here I sit, feeling great when I expected to feel lousy.  I'm not complaining.  Today is Elizabeth's eleventh birthday and it seems I got the nicest present.  When I mentioned that to her, she said, "Having you feel good is the nicest present for me too, daddy".  Boy, I am blessed with good kids.

We leave for Mayo on Monday.  We should have answers from them by Tuesday or Wednesday I would think.  I don't want my cancer to come back but I don't want to die from chemotherapy either.  I am sure the doctors will figure out what balance of risk is best.  In the meantime we are praying that they will be inspired as they consider my case.

Patience

Who are those "youngsters?"

Many years ago JoLynne and I had a bit of a role reversal.  I had just finished my first year of dental school and JoLynne only needed one more semester of college to graduate.   We had a brand new baby, Shanelle, so it seemed the perfect arrangement.  I would stay home for the summer and take care of our baby while JoLynne finished her last semester of college.  I distinctly remember the night before my first turn as "Mr. Mom".  I had so many things I was going to get done.  I had everything planned, I would get JoLynne off to school in the morning,  lay Shanelle down for a nap and then the morning would be mine to get done a dozen things that I had been putting off way too long.  I remember before laying down to bed that night  carefully checking my list of "things to get done."  I was excited for morning.   The next day everything went fine up to the part where I saw JoLynne off to school.   After that it just didn't happen the way that I had envisioned.  Shanelle wouldn't stay asleep, people kept bugging me, one thing after another.  At the end of the day I found that I had only crossed off a miserable number of my "to do" list items.  I was discouraged and determined that it just required better planning on my part.  So, I laid out my list again and went to bed, confident that the next day would be a success.  At the time we were staying at my parents house so we were a little out of our element.  The next day arrived and everything went well again until JoLynne left.  Again, Shanelle was fussy.  Nothing I did seemed to make her happy unless I was personally holding her and playing with her 100% of the time.  I remember watching as my list was again being neglected.  At one point she was especially unhappy, just then the phone rang.  I ran to get the phone but in the process stepped on a sewing pin that was hiding in my parents long shag carpet.  (Sewing pins in the carpet were the bane of my existence).  I hopped to the phone to find it was a wrong number then the doorbell rang.  I was hopping on one foot towards the door, with Shanelle cradled in my arm crying when I landed right in a pile of dog pooh which was laying on the floor.  (Okay, I have no idea how this got in the entry.   I would like to blame it on our old incontinent dog but he was long gone but then.  I really have no idea how it got there, but there it was)  I now had a crying baby in one arm, a sewing pin wound in my left foot and dog pooh on my right foot.  The door was some guy wanting to sell me something.  I remember after shutting the door sitting down on the floor and crying with Shanelle.  How could I be such a failure as "Mr. Mom?"  I remember pouring out my woeful story to JoLynne when she came home from school.  She listened patiently, like always, and then told me, "Your problem is your list.  If you start out planning on getting nothing done but taking care of Shanelle then you will probably exceed your expectation.  If you start out with this long list you will always end up disappointed."  She was right, of course,

When I began this process of chemotherapy I had visions of what what would happen.  I knew that I wouldn't feel well at times but even then I imagined I could do things that didn't' require physical strength I was going to teach myself to play the piano, do my genealogy, finally get serious about learning French, and a dozen other things.  Needless to say, things haven't worked out exactly like I planned.  Today for instance, wasn't a good day.  I didn't have a lot I wanted to get done but there was a leaky valve under our toilet that had to have a bucket under it.  That, I thought was an easy job.  All I need is a part and about 20 minutes.  Surely I can do that.  Well, I managed enough energy to get to the store and get the part.  I turned off the water to the house and took off the valve.  That's when my strength left me.  I was so tired I could barely stand up.  Then I realized that I had bought the wrong part.  Arghh!  I tried to get up to get to the car but I wasn't doing well.  Sweet JoLynne to the rescue.  She stepped right in and said "I can get a part, how hard can it be" and off she went.  Not long later back she came with the right part and with her help we finally got the toilet fixed.  I was exhausted when it was done.  To be honest, I laid in bed and cried a bit feeling sorry for myself and my lack of ability.  Tears of self pity are not the sweetest tears to shed.  I am feeling a little better now,  (well enough to write a blog) but still weak.  I find that the trait I lack most is patience.

Yesterday I felt better than today and was able to go to a Stake Presidency meeting.  In the opening prayer to the meeting the other counselor plead with Heavenly Father for my my health.  More than half of the prayer was for me.  The closing prayer was much the same.  It made a profound impression upon me.  I need to remember how many people care about me and are praying for me and I need to patiently wait upon the Lord.  He knows best.  This too will pass and in the meantime, I think I will quit making "to do" lists.

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.

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.

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