Wednesday, January 25, 2012

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.

Sunday, January 22, 2012

Don't get into a war when you have no armies

I'm sorry that my posts are so widely spaced.  A friend told me the other day that I needed to post more often so people wouldn't worry.  I will try to do better.

This round of chemotherapy has been challenging.  It started out pretty normal but then when I expected to start rebounding and regaining my strength...I didn't.  I managed to catch a cold, that didn't help.  I have never enjoyed having a cold but catching one when you have a white cell count of "zero" is a whole new experience.  Wow!  I am now very impressed with the importance of the immune system.  After a few days and a fever and some chiding from my sister in law, I decided to call the doctor.  They took a blood sample and after checking my fever they started wagging fingers at me as well.  They wanted to know why I hadn't called earlier and I gave them a very logical answer "I didn't want to bother  you"  The nurse didn't like that answer at all and told me "It's guys like you that end up septic"  Hmmm, I need to come up with a better answer for that question in the future.  Maybe something like "I was being held captive by Taliban terrorists" would work better.

So, the nurse practitioner took a look and told me that my blood work was lousy.  Basically no white blood cells and way too few red blood cells as well.  I had been fainting the last few days and she said that was because my blood didn't have enough cells to get air to my brain.  She was confused about why the drugs they were giving me had failed to bring up my blood counts like they were supposed to.  You would think that since that shot costs $4000 each it would work a little better.  I need to check and see if they offer a guarantee or something.  She then sent me down for a chest x-ray to check for pneumonia and then told me that my lungs were clear but that I had two broken ribs.  By this time I was wondering if they were really mixing up my tests with someone else.  I told her, "I really don't feel that bad and my ribs certainly don't hurt."  She showed me the pictures and told me, "Well you should feel lousy and your ribs should hurt, maybe your'e just used to feeling lousy and now you think it is normal".  I'm not sure if that was supposed to make me feel better or not.  Well, they shot me full of antibiotics and gave a shot of something called "Epogen".  It's supposed to make your body make more red blood cells and will now disqualify me for the Tour de France for at least a year.  Darn it!  The next day they sent me to the hospital for two bags of "packed red blood cells".  It looked a lot like ketchup to me but I'm taking their word on it.

Where did I put my fibula?
I began to feel a little bit better and then on Saturday I got an infection in the skin graft of my leg where they harvested the fibula bone.  We sent a picture to my surgeon at Mayo and he didn't like what he saw so back to the hospital we went.  They didn't like it either and decided to keep me in the hospital for a day or two on IV antibiotics until it was resolved.  An x-ray of my leg showed that the infection hadn't gotten to the cut bone ends yet, thank Heavens.  They wanted another x-ray of my lungs.  They came in and told me again about my broken ribs, "I know, I know" was all I could say and "no, they don't hurt".  By Sunday they were talking about still keeping me longer and I told them that I was due to perform an important surgery the next morning and it had already been rescheduled twice.  They finally agreed to let me go if I would stay on IV antibiotics and have a nurse teach JoLynne how to hang the drugs.  That worked for me, we finally got discharged at about midnight.

Bald is beautiful....or something
On Wednesday I was supposed to start another round of chemotherapy.  The doctor took more blood and said that everything was still really low.  By the way, I figured out part of why my blood levels are so low.  Every time I turn around somebody wants two or three more test tubes full to look at.  I think the problem is that I am running out because they keep draining me.  Anyway, he was unwilling to start chemo again until the blood work looked better so I got put off a week.  I was disappointed because that means it will take me longer to be done but it didn't seem to be a matter for discussion.  He did say that my chemo dosage was probably too high and that was the reason that I was not rebounding on schedule.

Well, every day since then I am slowly feeling better.  My strength is returning, I have quit fainting, my appetite is improving, my cold is slowly getting better.  On Friday we went to wound care clinic and the doctor looked at my leg and had some good ideas about how to help it heal.  He picked up some cutting tool and said, "this is where I get even with dentists".  Yikes!  Little did he know, my leg is numb in the surgery site so it didn't hurt at all.  I guess he will have to get even on somebody else.  It was kind of gross to watch while he sliced away all the surface of my wound.  Even though it was disgusting I couldn't quit watching.  Morbid fascination I guess.

Today was Sunday and I felt great.  I was able to help with a ward conference and attend all my meetings.  I even did temple recommends this evening.  I think I had four servings of dinner.  I have two days to try and gain seven pounds.  Bring it on!  JoLynne won't let me eat anything that has less than 700 calories.  It's really weird shopping with her.  It's like I have been transported to a nutritional alternate universe.  I'm just grateful to feel well.  Hopefully this Wednesday I will feel well enough to get get chemo and get sick again.

Monday, January 2, 2012


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.