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:

A Day in the Life

Last night provided six and a half hours of sleep.  Just after I woke up I was able to put some time into my exercise chart and talk with the physical therapist.  I was also able to spend some time exercising.  Nothing too interesting.  Breakfast was three yogurts.  That's a bit odd.

Emily arrived at 10am.  Then around 11:30 my sister Jennifer visited for a few hours.  Right in the middle of that Gavan and Amy stopped by and brought lunch from Crown Burger.  Everyone left opposite their order of arrival.  Lunch was delicious, Gavan and Amy are awesome and fun.  Talking with Jennifer was great, we don't get to talk often so it meant a lot to have her here.  And of course, Emily is my sun, moon, and stars.

There was some movement today in regards to the bone marrow transplant.  My siblings will, if they're willing to, be tested as a match.  Jennifer was actually checked while she was up here today.  The test is done with a blood draw.  The results won't be back for 7 to 10 days.  If my other three siblings are checked in the next two weeks then we should know before the chemo is finished whether or not one of them is a match.  If none are then I would need to start looking elsewhere.  So there you have it, the search has begun.

The donorubacin and vincristine was administered near 11am.  It has caused me to bloat up something fierce.  Crazy bloating means no dinner.  The calorie count will stand at 1300 for today.  Today was a good day due to Emily, Jennifer, Gavan, and Amy.  It was rough physically, vincristine always is.

I'm not on steroids today, so I'm pretty tired.  Normally I'm wired right now, it's only 10pm.  Apparently I'm on a rotating schedule where I'll essentially take steroids for 4 days and then not take them for a week or so.  All that means right now is that I need to wrap this up and get some rest while the getting is good.

Today's picture, the whole family on the recent Disney Cruise:

8 Liters

Since last checking in I've had 6.5 hours of sleep, a shower, 600 calories for breakfast, 600 calories for lunch, 1150 calories for dinner, hiccups most of the day, several e-mail and text message exchanges, a few phone calls, and a CNA possibly hit on me. It's 11:10pm now. I've already ingested my restoril.


There are no interesting medical facts for today, tomorrow is more interesting. They dripped cyclophosphamide today, it leaves me bloated. They will drip vincristine and donarubacin tomorrow. I have no idea if I am spelling donarubacin correctly, I am unwilling to find out at this time but willing to admit my laziness. Soon, thanks primarily to vincristine, I will begin to lose sensation in my toes and fingers. Right now I am in the honeymoon phase. I feel pretty good and that will last, with a bit of luck, until about day 14. From there everything goes downhill. I'm as prepared for this as a person can be. I feel no apprehension. I have spent the last 7 months focusing a great deal of effort on building a healthy body with the intention to devastate it using toxic medical procedures in an attempt to save it. So far, everything is going exactly according to plan. Just in case you're wondering, that is supposed to sound funny. It is also completely accurate.


Right now I'm telling myself to expect 120 days in the hospital. My first time through that was one of the worst frustrations, hoping and expecting to get out and not being let out. I could be out by June!


Fun fact, yesterday I urinated just over 8 liters. That is 17 pounds, which is more than ten percent of my body weight. They're pumping a lot of different liquids into me.


My brother and Greg visited, good times. No Emily today, I would emote a frowning face but, again, I am too lazy. I don't know. That's about it. I need to get to sleep. It's 11:15 now. It was a good day. I will share more soon.


Enjoy Max the Pirate:

Censored for Your Viewing Pleasure

It's been a good day, I've felt well and enjoyed the company of wonderful people.

My meals came in at 650, 400, 500, and 750 calories.  2250 calories isn't going to cut it, I need to stay above 2500.  2750 should be my goal.  They say that you're 70% more likely to achieve goals you share with others, we'll see if that works out here.

Today's highlights - Emily!  Always the star of my show.  The time went far too fast, as it always does.  We worked out some long haul logistics; visited with Al and Sherrie in the early afternoon; and visited with Scott and Melissa later in the evening.  We also watched some Modern Family, ate lunch, and laid around hugging each other a lot.  It was awesome, she'll be back Wednesday, I'm looking forward to it.

There are a few issues I haven't decided on yet as far as the tenor of my posts.  I wrote my last log primarily for me, for review.  That's already been paying off, as I search it for information about how various medicine made me feel or what food I enjoyed eating.  That type of useful historical information will make it into this log as well, depending on whether the procedure I'm being subjected to is one I'll repeat in the future.

In the last log I also spent a good deal of time talking about who visited me, a lot of you reading this don't know each other.  It's boring to read about people you don't know anything about.  I would often include a lot of my emotions.  Emotions come and go quickly.  They're not boring, but they can certainly be pointlessly upsetting to others.  Finally, I would discuss many of the more minor inconveniences and discomforts associated with my situation.  There are a thousand little issues and pains that I could complain about, I'd prefer to only complain about those that also entertain.  So I'm considering writing less about some of these topics and focusing more on what is interesting to others or helpful to me.  let me know if you disagree.

Essentially, this time around, I'm writing this to help the reader know what I'm going through, how I think (hopefully my children read this one day), and to share my sense of humor, my interests, and my loves during an otherwise dark period of my life.

It's bedtime again, I took my restoril 30 minutes ago.  Surely I can manage more sleep tonight.  Enjoy a picture of Emily and me in Cabo a couple weeks back, we took a Disney cruise with the boys.  Good timing, right?

Bloody Bedtime Buddy

After posting last night, just before 1am, I decided to try and get to sleep.  With little luck in that pursuit, at nearly 2am I decided to head to the restroom.  Upon returning to bed I noticed little black dots on the bed. I almost dismissed them in preference of sleep.  When I touched them I noticed they were wet.  So I checked my PICC line, which is tapped into a massive artery, and it was just gushing blood.

The odd part is that the line wasn't pulled.  My platelets are low, 75.  They also have me giving myself lovenox shots every night (which still strikes me as odd).  So that could be why it started bleeding.  Anyhow, it was making a mess and there was a lovely spray pattern so I grabbed some tissues, applied pressure, and pressed the nurse button.  It's a good thing I didn't just go to sleep, I can't really afford the blood loss.  They steal a lot here and my bone marrow isn't properly producing red blood cells anymore, since arriving here I'm down from 37 to 29 on my red blood cell count, at 24 I start receiving transfusions.

Sometime after 2am we had the mess patched up, I have a suspicious feeling it'll be happening again.  When they placed the PICC they made a big deal about how large the artery was compared to most they see and how easy it was to place.  I experienced no pain post placement, further evidence that there was ample room in the artery to hold the PICC without them damaging the walls on the way in.  My guess is that the artery is maybe too big and pumping too much blood and that with my inability to clot well this is going to keep happening.  We'll see.  Next time I'll take a picture.  Arterial blood fountains possess a unique beauty.

So I pulled off four and a half hours of sleep, despite taking two restoril.  Breakfast was a bit too big, 650 calories.  We'll see how soon I can eat again.

Emily will be here soon, I'm excited.  She makes everything better.  I've been feeling emotional but not for any conscious reason.  I'm probably suppressing some feelings.  Crying while listening to Radiohead, or while writing about how excited I am to see Emily, that's not good; especially if it's your only reason for crying.  I'll do some analysis and see what's going on.  I'm not sad.  Perhaps it's just how in touch I become with my feelings in the semi-isolation of a hospital room.

Anyhow, you peoples of the world, I love you all.  And that should mean a lot to you, as it's coming from a man who hates people.  Have a wonderful day.  It's the only reasonable thing to do with every day of your life.

Sunday Was Better

The night went well, no fever.  The fever hasn't come back up today either.  It's safe to assume that the antibiotics are doing their job.

Modern medicine deserves my gratitude, even if I die in its arms.  I extend my gratitude and respect to all of the scientists, doctors, nurses, and nursing assistants.  Thank you for the world of modern medicine you've created.  It certainly has many problems, but it has saved my life and the lives of my loved ones more times than I can recall.  Thank you, world of medicine, for giving me another day to play the only game in town.

The highlight of the day, besides no fever, was having Emily and the boys visit.  They were here for about five and a half hours, which is awesome.  Homework was done, halls were walked through, games were played, children were fed, Emily and I made out like freshmen every time the boys looked away, and in all other ways life was as it should be; except that we were in a hospital.  Home really is where your family and friends are, not where you are.  Today this hospital was home, tonight it is not.

The family peoples left around 4:30.  After they left Jonas called me four or five times.  We must've talked for close to two hours tonight.  Max and I talk a lot.  Jonas doesn't talk to me much, he just seems to have other interests.  The last time I was in the hospital he didn't call often.  I really appreciate his interest.  I've talked to him about his concerns, I know he's sad and that isn't going to go away without time.  I have tried to convince him to not be sad about things that haven't happened though.  Hopefully he can find himself in a happier place soon.  Either way, for me it's great to connect and share with him.  He's been a tough nut to crack.  Maybe this is all it took, a couple rounds of chemo and several months in the hospital.  If only I'd known sooner.

In between talking to Jonas I spent my evening reaching back to everyone who reached out to me today.  I have a whole army of supporters, it's awesome!  That's why we all fight for another day in the game, to share love with our friends.  Some people don't know that's why they fight, but it is.  Thanks, all of you.  You make my life better and all the more worth fighting for.  I may not be built to take on cancer, chemo, or a bone marrow transplant.  Regardless, I'll give it my all if it means I have a reasonable chance at continuing to share my love with my friends.

All told I spent six hours on my feet today, performed a variety of exercises, and I am suffering accordingly.  The problem right now is that I'm burning more calories than I'm taking in.  My take away thought for the day: It's time to ditch large meals and work on small frequent meals.  It's very difficult to eat over 2200 calories a day when consuming 3 large meals.  I was able to do as much as 3300 when I was eating 7 and 8 smaller meals.  For lunch I managed 750 then 700 for dinner.  2200 for the day, not fabulous.  Not close to what I spent.  I'll be a better piggy tomorrow.  I also need to have them bring in the exercise bike.

I took my sleeping pills half an hour ago, it's 12:38.  Good night!

Pseudomonas

Emily was the best part of the first two days.  She drove me here, stayed with me, slept in a crappy bed next to me, and made me feel much better throughout the bacterial infection.

Emily left Saturday night to pickup the boys, which my in-laws had been watching (thanks guys), she'll be returning this morning with the boys.  Max said he wanted to trade one of his birthday presents to visit me.  That's a pretty big deal for Max.  It takes a lot of energy to avoid thinking on how much I already miss my family.  I'm sure that will be increasingly taxing over the 12 week hospital stay.

For now I'm in relatively high spirits.  My fever broke around 6 last night and it hasn't returned.  My muscles are strangely sore, likely due to a lactic acid build up brought on by the bacteria.  My headache is gone.  That was a terrible headache, a frequent 5 on the pain scale.  I'm eating again.  I don't know if it will stay down but I think it will.  Trust me, I'll let you know.  I'm thoughtful like that.

Now that I'm eating again it's back to calorie counting.  I really need to keep my weight and strength up this time.  I can't strength train, since the muscles don't build back up properly once torn due to the disruptive nature the chemo has on cellular regeneration.  So I'll be counting on yoga, stretching, walking, and the like to maintain at least some of my strength.  The last time I was here I actually lost a lot of muscle due to strengthening exercises I attempted while on chemo, whoops.  I ended up so bad off that I couldn't even lift myself off the floor, at 134 pounds.

I knew that I was going to end up back here, or at least I knew it was the most likely scenario.  So I've been doing my best to build myself up for it.  I wanted to start out strong so that I'd have more to lose before I was put back into a gimp condition.  For the last 7 months I've been working out almost every day.  I've gone from 134 pounds up to 164 pounds.  Right now I can consecutively do 5 pullups (old broken right elbow holds me up), 35 pushups, 100 squats, 100 lunges, etc with free weights.  I've kept track of all of my exercising metrics so I'll have a good measure of what I lose, which I'm assuming will be a lot.  But more importantly it helps me know the difference between pushing myself and merely stretching my muscles.  Even while I was sick yesterday I was doing lunges and squats.  Yeah, don't do that.  It made me feel quite a bit worse.  I'm just saying, I'm dedicated to pulling through this with as much health as possible, however little that is.  I feel like I went in blind last time, now we can see if it makes a difference to go in with knowledge and resolve.

For now, I'm looking forward to seeing Emily and the boys.  I need my morning antiacid pills, a dressing change for my PIC line, and a shower.  I've had 750 calories for breakfast, last night I had about 300 for dinner.  A grand total of 1350 calories since Friday morning.  There's a lot of pigging out in my future, pigging out.

PS - my bacterial infection is pseudomonas.  My physician just told me this.  She said "it is one of the scary ones and had you not been here it would have killed you, as it must be treated through an IV."  No more boring e. coli for me.

Back in the Hospital

Well shoot, my leukemia is back.  I was hoping I wouldn't ever relapse.  I knew that wasn't a reasonable hope.  I was also hoping that I'd have at least another year before I relapsed.  No such luck.

On Friday at 9:45 I received a call from my oncologist.  She told me the leukemia had returned and that I would need to decide what to do.  I spoke with Emily and decided that I wanted to make a run at the bone marrow transplant.

At 1:45 p.m. on Friday I was admitted to room 804 east at the LDS Hospital in SLC.

I had felt fine but while driving to the hospital I could tell I had a bacterial infection.  I arrived at the hospital with a fever and they started me on IV antibiotics.  From there I had a PIC line placed in my arm, an MRI, and an EKG,

In the past 48 hours I've vomited several times, had high fevers, minor rigors, and they're still not sure what the bacteria is.  Though they do know that I was right in believing it was a bacterial infection, they've cultured some of it in my blood.  What they don't know is what type of bacteria it is, that takes several days of culturing.

It's unfortunate that I'm coming in sick.  I haven't been able to eat, everything comes right back up.  I told myself that this time through chemo I was going to keep my weight up.  It's a bad start.  I also told myself I wouldn't lay in bed all day, that hasn't worked out either.  I've been to sick to do much else.

My fever broke an hour or so ago.  I'm going to try to eat a sandwich here in a minute.  Here's to hoping I keep it down.

Chemo meds start in a few minutes, hyper CVAD is the protocol of choice this time.

That Was Painful

That was painful.

Today I went into my oncologist to have marrow and bone extracted.  Super awesome best of good times.  I know, I was there.  I believe this is the fifth time I've had this procedure performed.  My hind quarters gain a lovely little scar each time.  We now have four marks on the right side of my tail bone and one on the left.

Three out of five times they've hit a nerve in the bone.  It is a wildly painful moment.  The sensation registers as a 9 on my pain scale, assuming 10 is pain that leads to a lack of consciousness (which I've done before, hello septic shock).  Today was one of those three nerve stabbing moments.  She had to pull everything out and restart, which is what happens in those cases.

As an aside, who needs nerves inside of their bones?  What's up with that, Evolution?  I don't want to know when bad things are happening in relation to my bones.  Skin is a different issue, I can see a purpose there.  Needless to say, I dropped the f-bomb at least three times in front of my doctor and her two friendly nurse colleagues.  They seemed pretty sympathetic.

Next Friday I'll visit with my oncologist again to discuss the results.  They'll probably call and talk to me before then as well.  The really good scientific results won't be back for two weeks, that includes the flow cytometry details.  At the very least it'll be interesting to know where the leukemia stands.  Here's to hoping it doesn't stand at all.

Enjoy the picture of my last bone marrow draw:

Emily's Valentine Letter

Emily,

I love you and I love you the most.  My love for you is ineffable and irrational.  Hopefully my actions bridge the gap that words cannot.  Everyday I tell you how sweet, thoughtful, beautiful, kind, loving, wonderful, amazing, smart, and attractive you are to me.  These are just words, weak adjectives.  Though true, they do not begin to adequately express my feelings for you.

Together we have built a life.  We have a comfortable home, wonderful children, and meaningful relationships with our friends and family.  I love our life, thank you for making it possible.  Thank you for building and sharing this world with me.

Your grace and beauty; your wisdom and charm; your kindness and love; your intelligence and humility.  These are your stock-in-trade and they are universally appreciated.  I find you peerless.  Your humility prevents you from understanding the truth held in this paragraph.  And that only adds to your charm.

Throughout our life together I've spent a fair bit of time hoping to understand how it is that a boy like me has been able to share his life with a girl like you.  I'm afraid the only conclusions I could draw depict me in a better light than I'm able to believe.  Whatever it is that attracts you to me, I'm so glad you see it.  

Thank you for being mine, for always choosing us.  This life is such a terrible and wonderful series of experiences. You have added so much wonderful to my life.  You are all of the good things.  There is  no greater fortune than your company, my best friend.

Love,

Ryan

Previous Writings

Follow these links to read content I've written in the past year:

1. Ryan's Cancer Log - a journal following my four months of chemo
2. Moving Forward - the end of the cancer log
3. A Reminder

In a couple of days my oncologist will be extracting some more bone marrow for analysis.  For the past seven months my only activities related to cancer have been monthly visits to my oncologist for a standard checkup and blood work.

Right now life is good.  We've been having a lot of fun together and hopefully that will continue for a long time.

Here's a picture I took of my home slices enjoying American Fork Canyon.

A Saint Valentine's Day Gift

This blog is my gift to Emily for Valentine's Day.  Emily likes when I write.  I'll write her a letter for Valentine's Day and post it here.

She has been asking me to write for several months.  I don't mind writing.  I like when Emily writes.  Emily is a wonderful writer.  She doesn't enjoy writing; I don't know why.  So, in an attempt to leverage my effort, I've been telling her that if she wants me to write she can start a shared blog with me.  She hasn't started a shared blog.  I believe this proves that she dislikes the act of writing more than she likes to read what I've written.  That's alright.  I yield.

We'll see how much use this blog gets.  You know, good intentions and all.  For now I plan to link or re-post some of my previous writing here.  It could be handy to have a central location for sharing my fumbling attempts to be known.

Every blog post should have a picture. This is a photo of my Valentine Emily in a fancy hat.