Tuesday, November 29, 2011

Still kicking

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

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

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

Bald is beautiful

Even in China

Saturday, November 19, 2011

The quiet battle

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

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

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

Friday, November 18, 2011

Kemo Sabe

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

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

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

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

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

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

Monday, November 14, 2011

"Viewer Discretion Advised"

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

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

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

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

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

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

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

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

Wednesday, November 9, 2011

Farewell to nose hairs

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

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

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

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

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

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

(double click the picture to make it bigger)

Sunday, November 6, 2011

Ice Cream and Chemo

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

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

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

Thursday, November 3, 2011

Be it ever so humble....

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

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

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

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

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