Sharing

Today they administered vincristine.  They've also put me back on steroids for several days.  I'm still eating well, no nausea.  I consumed ~2400 calories today.  Last night I learned a trick to sleeping well, two restoril and an ativan.  There is a spinal tap scheduled for tomorrow.  I've received platelets twice today and I'll receive platelets tonight in preparation for the spinal tap.  I feel well, I slept well, and it has been a good day.

Emily and the boys arrived at 4 and left at 8:30.  Emily and I somehow managed to slip in a game of San Juan.  It's now 3-0 in my favor.  She's playing a strategy that would work better with more than two people.  I'll see how long I can get away with the weenie strategy that keeps winning before she decides to quit investing so much in production.  As far as something the rest of the world would understand, I helped Jonas with his math homework while Emily worked with Max on shapes and colors.  Max knows that an ellipse is the same shape as a regular oval.  Jonas now knows how to find all of the factors for a given number.  It's good stuff, folks.  We had a great time.  Too little food and water.  Every time a staffer would walk in the door the boys would lay into them with questions.  It is humorous and deafeningly loud.  I'm a fan of the humorous part.  I look forward to seeing them again very soon.  Also, Emily is wonderful and beautiful.

My brother Scott visited and donated a blood sample to test for bone marrow compatibility.  In my adult life I've grown closer and closer to Scott.  As a child I looked up to him.  I don't spend much time with him but no friend knows me better.  We talk about everything that makes life what it is.  I'm not sure if Scott is humoring me, if so he's doing an incredible job, but I don't have a friend who enjoys discussing philosophy, science, and the future as much as he does.  Those are three of my favorite topics.  I have hundreds of favorite topics, but those three are in the top five.  I want everyone to know what Scott is to me and how much he means to me.  In time, I hope to let all of my loved ones know how I feel about them and why they are special to me.

This writing is about letting people know what life means to me, what you people to me.  Not to be depressing, but there is a powerful and present threat to my mortality.  I may not have time to let those that I love know my feelings concerning issues they are interested in.  So here I am, writing.  I'm sharing and hoping that the result offers both comfort and hope in the present; and in another time I'd want these words to remind those I love of what they've meant to me.  I want them to know of the love and respect that I feel when I think of them; I want them to know of the gratitude and appreciation I feel for them; and finally, I want them to know what an honor and joy it has been to share my life with people who made me feel as loved, trusted, respected, and important as they did.

Just in case you aren't sure who you all are: Emily's family, extended and immediate.  My family, extended and immediate.  The Ashby's, Bunton's, Thorpe's, Stevenson's, Turner's, Al and Martha, Hijas, all of my many awesome Ancestry friends,  OrangeSoda friends, so many other professional friends, many people from the old Grandview 2nd LDS Ward where I grew up, all of my childhood friends and their wonderful parents, all of Emily's friends (especially her long-running book club friends), anyone who shows Emily love and support, our many loving neighbors, and anyone who has ever taken the time to get to know me and let me get to know them.  These people are the foundation of my very happy life.

The picture of the day: Emily and Max, each with their own sweet set of wheels.

Waste

Today has been a good day.  Emily, Terri, and Ryan visited.  The time went by too quickly.  We discussed great Leonardo DiCaprio films.  Emily and I played San Juan twice; I may have won both times.  Finally, I spoke with my boys on the phone for thirty minutes.  There is nothing better than good company.

The medical update.  I'm eating plenty of calories.  My platelets were at 10; I received two transfusions of blood product to correct that.  Tomorrow I begin a course of chemo with another spinal tap on Thursday.

One topic I consider frequently, and that I've been meaning to write about, is waste.  When I explain a set of choices to Max I will say, for example, "Max, you could spend the next few minutes watching a show or you could play outside but in 10 minutes we need to leave.".  Max invariably replies "I would like to waste my time...".  My proposition to him utilizes the word spend.  His response consistently converts spend to waste.

The first few times I noticed Max converting spend to waste I thought perhaps he was grabbing for a word that roughly meant what he was hoping to express.  Later I confirmed that this wasn't the case.  We discussed his use of the word and I tried, gently, to help him understand that there is a difference between spend and waste.  Now, there is certainly overlap in the many definitions for the two words.  But waste generally denotes a lack or loss of value.  It was clear to me that Max understood the definitions; he was converting on purpose.

He wasn't just doing it in the scenarios I described.  He used the word waste often where I would have used the word spend.  If we were taking a trip to the grocery store he would take one of his two dollars and explain to me that he only wanted to waste one of them.  He had me thinking.

For several months he's continued this pattern.  I only attempted to correct him once.  For the most part he's converted me.  He is using the words correctly.  The rest of us are, I estimate, fooling and comforting ourselves by using the word spend when we waste.

When Max buys candy at the store and later enjoys the experience of eating it, he gets as much value out of the experience as the next person.  The truth though, and Max knows this, is that candy doesn't offer you health benefits and it all tastes pretty much the same.  Any given candy buying/eating experience is difficult to distinguish from another.  So the question would be, have you ever had candy before?  If the answer is no, then it is probably an experience worth spending time and money on.  If the answer is yes, then when you find yourself buying and eating candy you're wasting money and time.

In life we have a certain amount of time.  Time is the most valuable resource we have.  If we live with a bit of caution and maintain our health we can buy a bit of extra time; we also buy a higher quality of time if we are in good health.  Using our time to buy a nearly identical experiences repeatedly is a waste.

Max is a very honest person.  He hasn't demonstrated capacity for guile.  He is correcting our use of the word spend by replacing it with a more honest word, waste.  I'm better off being honest about wasting vs. spending.  To spend is to trade.  We should use the word spend when the trade is fair.  If I am getting the short end of a trade, if I am buying experiences that are old and tired, I am wasting.  Perhaps if I use the words as Max does I would save a great deal of waste.

Again, I leave my ramblings incomplete.  Max loves to waste and so do I.  Max has helped me see it in a different context.  I didn't know I loved to waste until Max made it clear to me that it is indeed what I do.  I always thought I was spending.  Perhaps we're simply a couple of addicts, full of wisdom but unwilling to stop rolling the dice.  It will be interesting to see where my thoughts on this matter come to rest, they will take time to settle.

The picture of the day:  Jonas, from 2 and 1/2 years ago.  He is a wonderful person, enjoy.

Good Days

In the cancer community there is a mantra: one day at a time.  Today has been a good day.  Everything has been different this time around, mostly better.  I believe the improvement is due to adopting this mantra, being in better physical condition, and knowing what can't be known.  During the previous treatment I overanalyzed; I tried to answer the unanswerable; and I tried too hard.

Scott Ashby is coming to visit.  He is, simply, as good a friend as I've ever had.  I look forward to spending the evening with him.

Today my time was spent on exercise, grooming, eating, resting, Steve Jobs auto/biography, and receiving fresh new blood.  I was down to 23 on my hematocrit count this morning.  Now I'm probably at 27.  I slept for ~5 hours last night and hope for better tonight.  It has been a pleasant and quiet day.

Tomorrow I'll visit with my sister and her husband.  And, since it is an Emily day tomorrow, we'll all get to visit together.  Which, honestly, is probably more fun for everyone.  The next bit doesn't apply to Terri and Ryan.  Writing about their visit caused me to think about victims of my conversation.  Having a pulpit and all, I thought I'd write a bit about my philosophy.

When left without the supervision of my better half I tend to steer conversation toward the nearest gutter.  It isn't the gutter you're thinking of.  It is my gutter.  It is filled with topics that are dark, not politically correct, charged, or insensitive.  I do this because those topics are interesting.  They let you learn something about your conversational partner.

I'd like to believe that I know a person well.  Simply knowing the weather in their world is boring.  I realize this is selfish.  Many people are uncomfortable with my conversational style.  I don't talk to those people often.  Not because I don't like them.  There are, in fact, many such that I love dearly.  I don't talk to them often because I don't see much value in conversing with someone uninterested in sharing.

I'm alright with small talk, I don't think I offend the people I converse with minimally.  I feel a bit sorry for the people I talk with at length.  I am always ready to share way too much information.  And I expect the favor to be returned.  I wonder how many people, as a percentage of the population, feel this way about conversation.  Based on my encounters, I'd say most people are willing to go through the "too much information" sharing.  However, I'd also say that less than 1 in 5 appear happy about what they're doing.

I leave my ramblings incomplete.  Hopefully all of you have had a good day today.

The picture of the day.  Jonas and Max receiving a care package from Chelle and Jeremy (thank you!):

9 Hours

Time with my family is the best time, I don't care how I get it.  A month ago my family piled into a Hyundai sedan and travelled for 10 hours.  Upon arrival it was 40 degrees warmer, we were 600 miles from home, and everyone was pleased with the result.  I enjoyed the drive home as much as I enjoyed the drive out.  I may have enjoyed the drive more than the cruise.  The drive felt more intimate.  Today we spent 9 consecutive hours as a family in the hospital room.  It was the best day I've had at LDS hospital.

We were all where we wanted to be.  Sure, there were little fights.  At certain points there was too much negative energy in the room.  But everyone wanted to be here.  We gave the boys endless opportunities to leave.  They didn't want to.  It was great.  I didn't feel this way last time.  I was different.  It was hard to have them here.  This time, it's all I want.

Seven months of being a full-time stay-at-home dad has changed me.  In so many ways I appreciate my family more than I did during the first round with leukemia.  I had a good career, I enjoyed it, and I tired of it.  I can't see my commitment ever tiring with my new role in my family.  Someday I may speak further on this topic.  It is vast, these few paragraphs are a mere hint.

Jessica and Elliot punctuated the day.  Luckily they came early, before the boys were really energized.  We were able to enjoy an hour and a half of conversation.  It was a lot of fun.  Elliot and Jessica have done so much for us in the past week.  I don't really know what to say.  

It is that awkward position where nothing I can presently do will adequately express my gratitude.  During the last round I learned to simply accept the love and kindness of others.  I've reverted a bit though, it's been a long time since I needed this type of support.  Thank you.  Thank you to those who have stepped in over the past week.  Thank you to those who've already offered help for the future.  My family would be buried by this disease if it were not for your love and support.  Thank you.

Medically, all was well today.  No nausea.  2100 calories, my intake.  It was a good day.

I'm really tired, for reasons previously mentioned.  I could write more but my back has politely suggested I quit.  So I shall quit.  Enjoy this picture, Emily snapped it today.

Max enjoying his hospital fort:

  

No Time for Titles

Let's see if we can wrap this up in 5 minutes.  I'm not feeling very well right now.  It's 9:50pm.

The day started out well.  No, that's not true.  I vomited first thing.  All there was to vomit was my pills and the water I took them with.  That was nice.  Not impacting food stuffs up your sinuses is nice.  Less than 5 minutes after that unpleasant start I was eating oatmeal with butter and brown sugar.  The oatmeal stayed down.  I know, I'm a magician.  300 calories accomplished.

Emily made the day awesome starting at 10 when she arrived.  We talked about everything until for a while.  Around noon I showered and Emily partook of an unsatisfactory meal from the cafeteria.  There was some more laying around and talking until just past two.  Then I tried to eat again.  It was another success.  Crackers from Jessica are passing through me now as evidence.

Valerie and Jacob showed up at half past 3 and we played San Juan for a while.  The game wasn't finished but Valerie schooled us.  Greg showed up to join the fun from about 4:30 to 5.  Everyone left around 5.  We busied ourselves with the finer points of Phineas and Ferb.

Right after everyone left my sister Erin dropped by.  It was impressive, she doesn't like to navigate between Provo and SLC alone.  I'm hoping she made it home safely.  Emily picked up some Cafe Rio and headed out at 6:30.  Erin talked with me until about 8:45.  The day ended at 1500 calories.  I held down three meals.

It was a fun day.  It is time to rest.  10:06pm.  Tomorrow Emily and the boys visit me, those are the best days.

Time to pick a pic.  My boys taking care of each other, nothing makes me feel more proud:

Friday Smells Like Yogurt

It's a minor miracle that dinner chicken sandwich and I didn't part company.  Neither of us knew what we were getting into.  We were young and inexperienced (and I'm pretty sure the chicken had turned).  I'm proud of us for sticking it through.

I felt queasy the entire night, thanks to the chicken friend in my tummy.  At 4am I was administered some drugs to ease the quease.  When I woke up, around 7am, I decided to try and eat some more food.  Two yogurts, one lemon and one raspberry.  This was followed with a glass of apple juice.  I ate the lemon yogurt first.  I previously believed the stomach to be a LIFO, last in, first out system.  It isn't.

Mid-phone call with Tim, 9am, and I'm apologizing for the need to vomit.  Sadly, I'm sorry Tim, I left Tim on the phone to listen.  I didn't realize it'd take so long.  So, so long.  After setting the phone on the bed I assumed the lotus pose in front of the toilet, that's how cool people vomit, and formed a relationship between my sinuses and yogurt that wasn't meant to be.  The rest of the day has smelled like yogurt.

It'll be a while before I go back for more yogurt.  The worst of it is that, despite quantity, I wasn't done.  The nurse came in while I was trying to sleep off the sense of nausea.  She asked me to sit up.  That's all it takes sometimes.  That's all it took this time.

Greg is visiting.  He is my only visitor of the day.  Greg has singlehandedly stopped me from going a day without visitors.  It's appreciated.  I get soft and mushy if no one stops by.  I need more reasons to sit up straight and act awake.

I just finished a burger for dinner.  Let's really hope it stays down.  700 calories appears to be the total for the day.

What are the good parts of today?  Greg visiting.  Talking with Tim and Buffy on the phone.  Learning something new about stomach accounting processes.  Daydreaming about my family, their happiness and their care.  Love texts from Emily.  Calls from Emily and the boys.  Max telling me that he counted to 300.  Those are great ways to fill up a day.

Emily will visit tomorrow.  Tomorrow will be another good day.  Let me find a good picture of Emily.  Have I mentioned that Emily is my favorite person?  Yes, out of all of the peoples, she is my favorite.  But you don't get a picture of the inimitable Emily today, just me and my boys.

Today has been a good day.

Max's Birthday!

Without that dose of steroids I was so sleepy.  I'm not sure how much sleep I had in the night, at least 8 hours.  Well, that's not very interesting.  Sleep.  I'm boring myself writing about it.

9am lumbar puncture, that was the plan.  It didn't happen, they ended up taking me down around 1pm for the LP.  This created a situation where Elliot and Jessica, who had planned to visit, almost didn't visit.  Luckily they did.  I was able to enjoy their company for over an hour.  They also brought me my favorite sandwich from RedRock.  That sandwich will stand as two thirds of my diet for the day.  It was disappointing to have lunch interrupted by the LP.  I love having time to talk with Elliot and Jessica.  I bought a few extra minutes by having transport wait in the hall.

After lunch there was the LP.  What is there to say about the LP.  It's not a big deal.  They shoot your back up with lidocaine and then they fish a needle into your spine and pull out some fluid.  In this case they not only took some fluid but they also administered chemo.  The issue with the LP is laying around for the next 24 hours.  If you need to have a bowel movement, cough, sneeze, hiccup...  Well, don't.  If you do you'll end up pushing fluid out of your spine.  This leaves your brain resting directly on your skull, rather than on spinal fluid.  This gives you the worst headache you've ever had and it lasts for a 8 days.  Sadly I know all of this from first hand experience.  The last time around I had a coughing fit after an LP, I couldn't really sit up for the next week without experiencing constant pain in the 5 range on the pain scale.  Anyhow, that's an LP.  I didn't do anything silly this time.  Hopefully that means I won't have anything terrible happen to me.

I laid on my back until 4:30, when Emily, Jonas, and Max came for Max's birthday party.  It was everything I could've hoped for.  We played games, sang, opened presents, ate, and had a wonderful time.  Max is so full of life and happiness.  He loves to share and laugh.  He's six.  He seems so grown up now. I don't know, I think he's perfect.  He is full of love, curiosity, and a surprising sense of appreciation for beauty.  Happy Birthday Max, I love you!

Emily and Jonas are getting all sorts of left out here.  No, of course they aren't.  I was able to be in bed with Emily for most of the evening.  She looked beautiful.  She's eating and sleeping well.  Jonas is doing well and he's happy at school.  This is not how it went the last time I was in the hospital.  It's encouraging to see how my family is handling this situation.

I ate about 500 calories of nasty for dinner.  I was afraid, for most of the meal, that I wouldn't be able to keep the food down.  This rounds my day out at 1500 calories.  That's 3 days of nutrition missing completely over the course of 6 days here.  This isn't going well, I'll keep working at it.  My stomach is very bloated and it is painful to eat.  It should be clear that when I'm not eating it is because I can't, not because I don't want to.

It was a good day.  As always, my family and friends are keeping my spirits high.  Thank you.

Here is a picture of my handsome birthday boy in his new birthday glasses: