Insert Inside Joke Reference Here

Chemo is going well.  For the past two nights I've been given the same drugs.  There are side effects but they've yet to prove serious.

I've spent the past two days exercising, eating, and trying to get sleep.  My energy is good and I feel good.  There is a strange anxiety that comes with isolation from the world I'm familiar with.  I'm comfortable and feel happy.  At the same time I'm filled with nervous energy.

I look forward to seeing Emily and the boys this afternoon.  I'm not sure what we'll do but I'm sure we'll have fun.  Perhaps I'll plan what we could do as soon as I'm done with this post.

During the past two days my mind has run rampant with philosophical thoughts.  However, I'm not in the mood to write about them.  I will mention a quote that is stuck in my head.  Winston Churchill is quoted as saying "If you're going through hell, keep going".  It reminds me of the poster with a cat hanging from a tree limb with the caption "hang in there".  I won't share my thoughts on either, it is funnier that way.

The picture of the day - my brother, our beautiful Rhodesian Ridgeback, and toothless me circa 1984:

New Protocol

I'm back in the hospital.  Chemo starts tonight.  The biopsy showed that the leukemia is not responding well to the first round of chemo.

We had to switch to a new chemo protocol.  The methotrexate that I was going to receive, as part of the B cycle of the Hyper-CVAD protocol, can't be given with antibiotics.  My white blood cells were lacking.  Going forward with methotrexate would've simply been too dangerous.  Now I'm on what is termed a salvage protocol.  It is a children's protocol.  It lasts for 10 days.  However, the hospital stay averages 25 days; that's because you need to wait for your immune system to recover.  We'll see what happens.

Today is my one year leukemia anniversary.  Leukemia is a bit of a wanker, so I'm not going to wish it a happy birthday or anything like that.  However, the leukemia birthday does remind me that time passes quickly.  Every day life feels more like a dream and dreams feel like life.  I am being pushed, like a pawn, through linear time.  This body, my body, possesses a mind aware of past, present, future, and the ending that waits for us all.  Though I possess this awareness, I cannot change my course.  I am a read-only file system.  I have predictive capabilities but no control; I have a false sense of control.  What a strange fleeting existence.  I love it.  No one knows how or when their journey will end.  We're all living out our own personal mystery novel.  For me, I'm guessing it'll be Colonel Mustard in the study with a lead pipe.

Emily and I had fun at the hospital today.  We repeated our Noodles & Co. experience for lunch.  Today we brought almost everything needed for a hospital stay.  When we arrived at my new hospital room Emily unpacked for me; she is always sweet to me like that.  We talked out my concerns for the current round of chemo.  It was all very therapeutic.  Emily has long been my therapist.

Today has been a good day.

Yesterday was also a good day.  There were several visitors.  My sister Jennifer stopped by for a few minutes.  She was surveying the yard for weed spraying.  That's right, Jenny isn't just donating bone marrow, she is spraying my yard for weeds as well.  I know, she's awesome.  Our friend Becca stopped by with a delicious pesto pizza.  It was nice to talk with Becca, I've only had a couple of chances to talk with her in the past year.  Elliot, Jessica, and Lily also visited.  We celebrated Max's 2222nd day, which was yesterday.  Jessica discovered this detail about the day and planned the party.  She brought gifts, balloons, party hats, and a cake.  It was great.  I have a picture of it.  Party hats make me look even more ridiculous, you'll see.

Jessica and Elliot have been doing a lot for us, again.  They've been supporting us in so many ways.  I'm not sure how they do it.  Life is too busy.  I'm glad they're doing it though.  Getting to know them better has been a wonderful opportunity and one that I didn't really consider possible.  Everyone seems to run parallel.  I must credit cancer for crossing paths in this way.  If it weren't for cancer I'd surely just be about my usual business of living.  Now life is more enjoyable and rich, cancer is perverse in this way.

On the family front Jonas and Max are doing well.  Emily continues to increase daily in beauty, kindness, and intelligence at her average rate.  And that's it.  I'm going to sleep now.

The picture of the day, Max's 2222 party.  You can almost see Jimi on my shirt:

Continued Confusion

Today was another confusing day.  LDS hospital called me at 8:45am to setup an appointment for a bone marrow aspirate at 12:45pm.  At 12:45pm we showed for the aspirate.  We waited for two and a half hours, the procedure began at 3:15, we were on the road by 3:30.

The PA that performed the procedure was confused as to why we were doing the procedure.  He reconfirmed with the physician that they really wanted it done.  There are blasts in my blood.  That indicates that the leukemia is surging.  We don't have it beat, we need to do more chemo.  That's not news.  Why are we looking at leukemia by way of a biopsy when we know that what we'll see is leukemia?  This is an $8,000 procedure; it is also quite painful.  So the biopsy is out of the way.

The question remains, why did we do the biopsy?  The results won't be back for at least 48 hours.  Never the less, they've gone and scheduled an appointment with me for tomorrow to discuss further treatment with a physician.  I'm so confused.  Why would we discuss further treatment before getting the results from the biopsy back?  Isn't that the point of the biopsy, to know what we should do next based on empirical data?  I'm afraid the meeting tomorrow will be a bit awkward.  I don't intend to let these questions go unanswered.  I'm out time, money, and pain.  They better have good reasons for what they've done.  If not, I'm going to quit trusting them and start demanding solid reasons up front.

Everything has been good, even with the confusing medical situation.  I've had a lot of fun with Emily and the boys and we continue to enjoy our time together.  Right now Emily is napping.  She's probably tired from making me so many tasty meals.  I haven't done well with eating over the past 5 days but Emily has been great about trying to feed me.

That's the update for today, it has been a good day.  They did hit a nerve when first attempting the biopsy, which means they had to go in twice; that's 4 out of 6 times that I've been unlucky with that.  Still, pain and all, it has been a good day.  The Lidocaine is wearing off, I bid you adieu.

Picture of the day.  Max during his brief stint, 2 and a half years ago, as a newsie; the money was good but the hours were too long:

True Story

Ugh.

I was admitted Friday.  I was sent home Saturday afternoon.  I continue to be confused.

The short version is more appealing right now, so that's what you're getting.  Starting Friday night and ending Saturday around 11am I was hydrated intravenously.  The night was terrible, hospital nights usually are, I slept for just over 3 hours.  At 4am blood was taken for a CBC.  That CBC came back really funky.  They recorded a 30% drop in red blood cells, neuts at 600...  I don't know, it didn't make any sense.  The physicians, I kid you not, said they didn't want to do another blood draw because that would be confusing.  What?  How is having multiple samples spanning a period of time confusing?  Especially when the last sample was strange, one would think the physicians might want more data.  Anyhow, apparently not.  Thinking about this makes my brain hurt.

I feel very much like a yo-yo.  In a few days I'm sure they'll readmit me, I'm just not sure they'll treat me.  I'm also relatively sure they'll do another bone marrow aspirate in the next day or two.  Who knows.  Maybe they'll get over their fear of re-checking my blood chemistry.  Ultimately I spent a bad night in the hospital and a good bit of time has been spent without achieving anything intended.  That's alright.  I'm happy to be home.

I'm tired.  I haven't ate well during the past four days.  My head hurts.  It started hurting last night, hopefully it quits soon.  I am not drinking enough water.  With my head hurting it's difficult to exercise.  Sleeping in the hospital bed bruised my left side in a serious way.  I'll figure it out.  The hospital stay really beat me up; hospitals suck.

This weekend our refrigerator died.  Luckily we have a second refrigerator that we use in the garage.  Max and Jonas have spent a lot of time over the past two days playing frisbee with Emily and me in the backyard.  I probably shouldn't be out there but I'm unwilling to sit around in the house.  Now it's Sunday evening.  Emily and the boys are doing the Sunday dinner thing at her parents' house.  I plan to brush, rest, eat, brush, hang out with Emily for a bit, eat, brush, and go to bed.

There were several somber moments this weekend; I did what I could to interrupt them with flatulence.  

The last few days have been good, despite the hospital/physician craziness.  Emily continues to be the glue holding it all together.  I love Emily the most; and not just because she is the best and prettiest, but she is.

The picture of the day is a recent shot of my boys and Megan:

As Expected

Okay, it's Friday and I have been admitted to the hospital as expected.  This is the tale of how it happened.

Two alarms went off at 7:30am.  I visited the AF Hospital for a CBC at 8am.  The happy plan: The CBC proves that I'm trending towards more platelets and neuts, later in the  evening I get admitted to LDS Hospital for the next round of chemo.  The sad plan: The CBC shows that my blood chemistry isn't trending positively and I head to LDS Hospital at 11:30am for another bone marrow aspirate.

Well, the morning CBC went sideways.  When a CBC is done through a central line the nurse will take a certain amount of blood and waste it.  The purpose of this is to clear the line of blood that isn't representative of the patient's circulating blood.  I'm assuming the blood in the line doesn't have the same chemistry as the circulating blood after a certain amount of time passes, I don't really know the biology here.  Anyhow, if the nurse doesn't waste enough blood the CBC results will be inaccurate.  I believe that is what happened this morning.  The nurse was having a hard time with the line; she flushed it three times and ran heparin through before she could get it to draw.  When she did draw she only pulled about 4ml.

The morning CBC came back showing platelets at 70 and my neuts at 900.  The Wednesday counts were 72 and 1000, if I recall correctly.  So we headed in for a bone marrow aspirate at 12:30, they shifted the appointment back an hour.  When we arrived they pulled another CBC, that's routine for out patient clinic visits.  10 minutes later we talked to a physician who explained why we should do the aspirate instead of starting chemo and we were all set to do just that.  But, in the 5 minutes between talking to the physician and the time appointed to perform the aspirate, I decided to pull out my phone and check the results of the CBC that was performed just 15 minutes earlier.  Yeah, IHC has a very cool patient website where everything they do in relation to you is updated minute by minute as results are obtained.  My platelets now showed 73 and my neuts showed 1.4.  Neuts generally don't jump by 60% in two hours.  Also, this put me well inside the parameters for continuing chemo.

I asked Emily to ask the nurse to ask the physician "What up, yo?".  Instead, she asked the nurse what, if anything, this meant.  After five minutes the same physician I spoke with earlier told me that my favorite physician, Dr. Ashe, told him to tell me that we should ditch the aspirate and admit me today.  So much telling and asking in such a short amount of time.  Topping it off, I told the physician "This has been pretty ridiculous.".  He agreed.

The reason for the morning check was to allow me to spend my Friday at home.  Instead it was spent here at the hospital and on the road.  In my effort to save time and enjoy one more day at home I ended up spending extra time.

Emily and I left the hospital and had some Noodles & Co. for lunch before returning to be admitted.  I bet you didn't see that coming.

The whole issue of moving forward with this round of chemo and the flip-flopping has been very strange and somewhat annoying.  A good deal of bad communication, and a little bit of bad information, complicated everything.  But, as the Bard said 400 years ago, and one nurse repeated today, all's well that ends well.  Today has ended well enough for me.

Emily is both fantastic and extraordinary.  Despite the odd path the day took we managed to have a good time throughout.  It is my sincere desire that she may continue to make up for, and forgive me for, my shortcomings.

The picture of the day would be me playing gin rummy with Emily, but that's on her phone.  Instead, I give you a shot of me and mine visiting the Ashby's some years ago.  Yes, it is normal for Max to look like that.

C-c-c-c-c-combo Breaker

I will likely be admitted to the hospital tomorrow.  But you never know.  My CBC on Wednesday indicated that my blood chemistry is good for round 2 of the chemo.

I asked the coordinator why they weren't admitting me on Wednesday and her response confused me.  She said there was no one in the clinic who could write the orders.  What?  There isn't a physician in the out patient clinic?  Even if there isn't a physician in the clinic to write the orders, there is a 5 member team of physicians that run the floor.  They're a team.  They cover the admitted patients and the clinic.  Surely one of the 5 can take a moment to write the admit orders.  I'm confused, this really makes no sense.  They are very busy, I know.  Last year when I was admitted they complained of how busy they were and mentioned 23 patients.  When I was admitted last month they had 32.  Are they not treating me because they are busy?  Are they not treating me because they know there is no rush?  Last year they would rush me in every time my blood chemistry was clear for the next treatment.  Meh.  I don't care, but I am confused.

I have had the pleasure of staying at home for so many days.  It's been so nice.  Today has been particularly nice.  Max and I relaxed in the hammock for half an hour.  I cleaned the house, Max practiced his penmanship, and we played Wii Sports.  Emily is on her way home from work now, Papa Murphy's in tow.  I plan to coax her into some hammock time before the day is over.  Days don't get much better than this.

It's alright if tomorrow breaks the combo of nice days at home.  I didn't expect these days.  They have been wonderful.  I plan to treat this as a business trip.  My career required travel often enough; sometimes I would be away for a day, other times 10 days.  I plan to be back home soon enough.  Even if it takes months, it'll just be a long business trip where I have plenty of visits from the people I love.

I broke the combo.  The combo where every paragraph starts with the word I.  Did you see that?  It happened right there in the last paragraph.  That is ridiculous.  Combinations are being broken left and right.  Hopefully nothing breaks my good day combo.  I've had good days every day for a long time now.

Gavan and Amy brought lunch for Emily and me yesterday.  We had a great time, Max permitted it; though he tried to deny it at one point with xboxery.  Gavan and Amy are also invited to live in the main building at the compound when I finally get around to starting my commune.

It's time to go and enjoy the rest of this day.  The picture of the day:  Gavan and Amy, this photo was taken in a hat shop we visited during a trip Emily and I recently took with Gavan and Amy to Las Vegas.  Gavan should always wear that hat.  I regret to inform you that he did not purchase it.

Round 2

First, the medical update.  I was told that when my platelets hit 65 and neuts hit 1000 they would begin round 2 of the chemo.  Yesterday my platelets were 58 and my neuts were 900; so close.  The trend is favorable, my platelet count has increased by an average of 7 points each day over the past 5 days.  As of today, Tuesday, my platelets should now be at or above 65.  Oddly, my favorite physician suggested yesterday that I should do another bone marrow biopsy today so they could better understand the morphology of my leukemia.  Now, that is a literal pain in the ass and it doesn't make any sense to me.  The information was relayed to me through a hospital coordinator.  I expressed my confusion, considering that we're only a week late and the same physician suggesting the bone marrow biopsy had mentioned that being two weeks late wouldn't be abnormal or a problem.  The coordinator relayed my confusion to the physician; the physician responded by saying we should do another blood check on Wednesday.

The summary of my near future: I'll have a CBC done Wednesday.  If that CBC indicates my platelets and neuts are at acceptable levels then I will be admitted on Friday for round 2 of chemo.  If my CBC indicates poor blood chemistry we will do another bone marrow biopsy on Friday.  I'm not sure what the morphology will tell them that is useful; especially when you consider that the only tool they have is chemo.  No matter what they see they're going to throw more chemo at it.  My suggestion is that they don't check my bone marrow until they believe I may actually be in remission.  It isn't one of those things you should be checking just for giggles.

Sunday was relaxing and pleasant.  Christy and Ryan visited for a couple of hours.  Christy brought by some yoga magazines.  Yoga is possibly my greatest resource in the struggle to maintain balanced physical health.  Christy and Ryan are thoughtful friends who've done much for us.  When I start my cult they'll definitely be invited to live in the commune's main building with me.

Monday was also nice.  Max was extra difficult.  Anything I like, he disliked.  Anything I disliked, he loved.  Max demonstrated his finest attempts at pointless antagonism.  He never got the better of me but he tried, oh how he tried.  Elliot, Jessica, and Lily visited for lunch.  The food was good, the company was better.  They left just before Jonas came home.  Jonas learned, just after coming home, that his fish had died days earlier.  There were tears, a fish was flushed down the toilet, and Emily was really grossed out.

Today Emily is home with me and we're spending the morning the usual way, teaching Max.  It has been a nice morning.  We have no plans.  I love days with no plans; Emily does not.  Max has finished learning his threes today, times tables are fun.  I'll work on a plan for the day, for Emily's sake.  It appears that we'll have a very nice day.

The picture of the day: An older picture of Elliot, Jessica, and Lily.

What's New

Another three days have passed.  Thursday, Friday, and Saturday have been good.

On Thursday Gavan visited for lunch; sadly, Amy has been sick and wasn't able to join us.  For Amy's sake I'll say we didn't have any fun.  That night I was able to visit Valerie, Jacob, and the baby.  He's a cute little nipper.

On Friday Emily worked and Jonas went to school while Max and I did our homeschooling.  It was a very normal day.  I went in for blood work that morning, I'll cover the details in a bit.  It was nice to be home, do chores, spend time with the boys, beat Emily at San Juan for the 12th time, and eat food that wasn't hospital food.  Everything is good at home.

Today my sister Jenny visited for an hour.  My friend Hijas is visiting this afternoon.  We'll be watching a movie this evening with the Ashbys.  It's a full day.  Jonas went to watch a couple of baseball games with Jenny and her friends.  Max purchased a popcorn and slushie from the gas station and spent most of the day playing The Legend of Zelda.  I did quite a bit of house cleaning today, the place is looking spiffy.

Okay, before moving onto the medical stuff, I feel the need to thank everyone for all that they're doing for us.  I also want to mention what a wonderful job Emily is doing.  She takes great care of me, the boys, and our life.  Everything is going very well; especially when considering how not well everything could be going.

Medical update: On Friday the blood draw showed that my platelets had climbed to 36.  They need to be 65 before they will admit me for the next round of chemo.  My neuts also need to be at 1000.  Well, my neuts were at 1000 on Friday.  They had been at 2500 a couple of days earlier.  They drop fast when I'm off the neupagen.  The plan right now, formulated by the physicians, is to check my blood on Monday and admit me Tuesday if everything is looking good.  My concern is that my neuts will keep dropping and that they'll be below 1000 when my platelets are finally over 65.  I'm not sure what we'd do then.  That's the update.  I'll be admitted on Tuesday if everything proceeds as they hope it will.  I would likely then spend a week or more in the hospital.  If I'm lucky I'll get to spend more time at home before the bone marrow transplant process begins.  On Wednesday, if I've been admitted, we'll have a consultation with a physician regarding the bone marrow transplant process.  My sister Jenny is my only match.  My other three siblings were tested and came up as not matching.  I'm feeling very lucky to have a related match; I'm all about increased chance of long term survival.  Thank you, Jenny.

Picture of the day: Jenny, Max, Jonas, and puppies.

Three Days, One Post

Monday:

Elliot and Jessica took the boys to a movie.  They returned to our house where we all spent the rest of the evening playing outside, eating tasty steak sandwiches for dinner, and talking about whatever.  We also snacked on rice pudding.  They headed home around 11.  It was awesome sauce.

Monday was a good day.

Tuesday:

Valerie and Jacob had their baby.  He's a cute little baby.  Emily was able to visit them at the hospital for an hour.  Emily loves babies.  She couldn't be happier about her new nephew.

Emily and I had a nice long visit with Scott Ashby.  He brought over the new Dorito tacos from Taco Bell.  They taste just as you would expect.  I find them to be delicious.  Later in the evening Emily made tasty chocolate pudding cake.  The conversation was the most honest we've had in a while.  I think I've finally convinced him to move to Oregon; I've been working on that for years.  I might be kidding about that last sentence.

Tuesday was a good day.

Wednesday:

So, I'm finally getting a post written today.  Here at home it is much more difficult to find the time to write a post.  I'm so busy with exercise, hygiene, eating, visitors, house work, spending time with my peeps, visiting hospitals, and sleeping that I don't have a single minute left in the day for writing.  

Emily is at work now, Max only did half his schooling today, I've only done half my eating, and I'm not sure what the plan is for the rest of the day.

Max is doing well with multiplication.  Homeschooling is funny.  He's great with addition, he barely understands subtraction, doesn't know what division is, but he's picked right up on multiplication.  I'm going to have him start memorizing the 12x12 multiplication tables.  It's a lot of fun helping and watching Max learn.  Emily works with him on his reading, he's quite good.

Here's the medical update.  Today, for the first day in about a month, my platelets held and actually increased by 1.  I'm at 23.  I need to be at 65 to go in for my next round of chemo.  My hematocrit is holding at 34.  We'll check my blood again on Friday to see how much, if at all, the platelets have climbed.  Once they hit 65 I'll be readmitted and begin the B cycle of the chemo protocol I'm on.

The B cycle lasts 21 days.  At the end of the B cycle we'll check for remission, bone marrow biopsy, and if I'm in remission we'll line up the bone marrow transplant.  

We'll see what the future holds.  I rarely concern myself with it.  I trust the physicians and I've handed myself over to the process.  At this point I concern myself with the present.  I focus on eating, exercising, sleeping, and spending quality time with my peoples.  My party peoples.

It's good to see that my body appears to be on the mend from the first round of chemo.

Wednesday has been a good day.  It's only 1:45 but I expect the day to continue to be good.

The picture of the day: Valerie and her baby boy - photo credits go to Jacob

Defeated at San Juan

The most interesting event in the past three days involves a card game.  Since Valerie returned San Juan to us the other day Emily has managed to defeat me twice.  The record is now 9-2.

Friday I received blood and platelets.  Emily was able to spend the time with me.  Diane took Max.  It was fun.  We played San Juan a few times.  We dealt with some funky full body rash that was attacking me.  We ate hospital food for lunch.  That was the first bad choice of the day.  It was a good day.

Saturday I had a CBC done at AF.  Then I had three calls with the LDS Hospital wherein I eventually convinced them to send platelets down for Sunday morning.  That was frustrating.  My platelets were at 19 and dropping.  They drop by at least 10 a day.  Platelets are ordered at 15.  They like to actually see a CBC saying that you're below 15 before ordering.  Convincing them that I would be below 15 should not have been as difficult as it was.  The problem is that if I did a CBC to prove it here at AF on Sunday morning, then I'd need to drive to LDS for the transfusion, since there wouldn't be enough time in the day for a courier to run the platelets down to AF.  Yes, these are the strategic issues one must deal with when consuming the blood of others.  The average person might suspect the need for pointy teeth, but that's a myth.  Your average vampire spends a lot of time haggling with hospital administration staff and has unremarkable teeth.

Emily's cousin Michael picked up the boys and took them to a park for an hour or so Saturday.  The weather has been beautiful.  The boys had a great time.  It was very nice of Michael.  That gave Emily and I time to clean up the house and relax for a bit.  Saturday was a very productive day.  Floor cleaning, vacuuming, laundry, dishes, showers for the boys, and I finally finished re-building my media server.  Most importantly, Emily made me more granola.  It was a good day.

Sunday, right now, I'm receiving platelets as I type this; I'm sitting in the AF Hospital Transfusion Lab.
I plan to spend the rest of the day hanging out with Emily and the boys.  We'll play games.  I plan on having today be another good day.

Everyday at home has been a really great day.  I generally say good instead of great because of my own philosophical reasons.  In truth, they've been great days.  Nothing is more desirable to me than sharing my home and my time with my family and friends.

The picture of the day:  I feel like I've left something out of this post, Emily will remind me.  This is Emily and me on an tube in our backyard.

8:36

I'm timing myself.

I edit.  I edit way too much.  My posts usually take me between 30 minutes and an hour.  The problem I've run into during the past several nights is that I'm really tired in the evening.  My creative energy is low.  That means my writing and editing are both slower and take more energy.  Because of this I'm considering no longer writing in the evening.  It takes too much out of me; it can leave me feeling burdened.  That runs counter to the purpose of these writings; the purpose is to share something positive.

8:41

I missed a day, yesterday.  No post.  I'm alright with that.  Emily really appreciates when I post.  So I'm back to not being alright with that.  I believe we will need to work a compromise.  If there is a lot going on during a given day, I will attempt to post.  If there is a string of slow days I'll post every other day.  And, this will be especially true during the bone marrow transplant process, if the days are terrible then Emily can post the update and share how I'm feeling.  Getting up to exercise when feeling terrible is difficult.  Attempting to be creative and positive while feeling terrible is nearly impossible.

8:46

Yesterday my sister Terri visited for a couple of hours in the afternoon.  We don't get enough time together.  We didn't spend a whole lot of time together as kids.  When we did she was just being a nice big sister and playing games with me.  I begged her so often to play this game where we'd just crash toy cars into each other.  She's always been a good big sister to me.  I look forward to continuing to get to know her better and spending time with her.  Terri is awesome.

Yesterday evening Elliot, Jessica, and Lily visited.  Jessica brought meatloaf, a pasta salad, and rolls.  It was honestly the best meal I've had in weeks.  And that's saying something, I've had some really good meals.  We hung out and talked; I introduced Elliot to the Violent Femmes "Country Death Song".  It was a really fun and tasty evening.  Elliot, Jessica, and Lily are great.  The past month has provided a wonderful opportunity to become closer with them.

9:10

Ten minutes of that is putting the boys to bed, it doesn't count.

Today Valerie came by for a visit.  She is so pregnant.  Oh my pregnant.  Pregnantastic.  It's pretty crazy that there will be another baby in the family so soon.  I'm very excited to meet the offspring of Valerie and Jacob.  Valerie is, I would hope, used to me by now.  So it's always fun to talk with her; I can just jump right in and say all sorts of crap that you'd normally want to cushion with context.  Oh yes, she dropped off San Juan.  Now Emily will have her chance at defeating me; it's still 5-0.

Tomorrow there will be blood transfusions.  Emily's mother has been kind enough to take Max while we're there.

Picture of the day, 9:20  Max can cross his eyes:

A Quick Update

Today was another good day.

The morning was spent teaching Max.  Max then left with Emily's Mom at noon and returned at seven.  It was really nice of her to take Max and when she brought him back she also brought dinner!  The Ashby's took Jonas after school until about seven.

This kid juggling allowed Emily and I to spend the afternoon and some of the evening at the LDS hospital.  We had a scheduled visit.  I received platelets.  The physician suggested that, depending on my blood chemistry, I may be admitted to the hospital on Monday afternoon to start the next 21 day chemo cycle.  I wouldn't necessarily be required to stay for the entire 21 days.  No one is ever sure how those situations will work out.

Emily and I had a great time together.  We didn't eat or drink enough, this is a common problem when visiting the out-patient clinic.  We always commit to doing better.  We don't ever do better.  But, we make up for it with binge eating.  That's good, right?  Probably not.

The evening went better.  I've maintained a more positive energy.  I plan to focus on relaxation along with maintaining and sharing more positive energy.  When I don't feel well my natural response is anxiety and when I'm anxious I'm crabby.  Let me know if you have any tricks to dealing with something similar.

That's it for today.  I'm tired.  There is a strange lump in the middle of my tongue and it hurts, the doctors have no idea what it is.  I'm also patchy, my hair is.  Some has rubbed off completely.  I look like a diseased stray dog.  It's working in my favor though, Emily has always been into the grunge look.

The picture of the day, Jonas excited over the gift of pickles on his third birthday.  I would like to feel that excited about something.  It's good to be a kid.

Chinless

Well, we're back to the no hair scenario.  My hair was falling out in clumps yesterday so I cut it all off this morning.  Emily acted as my lovely assistant.

While having no hair is convenient in many ways, it deprives me of what I consider to be "my" chin.  In the past 15 years I have rarely shaved my chin hair.  I like my chin hair.  Without my chin hair I have very little chin to speak of.  I don't know what else to say.  I'll miss my chin.

Emily went to work today.  I stayed home with Max, we stuck to our home school routine.  I exercised after straightening the house and doing the dishes.  Later I had a twenty minute nap.  I was able to talk on the phone with Tim for a while.  At 3 my brother came by to visit for a couple of hours.  My boys played with Scott's outside while we talked.  Emily returned from work just before Scott left.  After that there was dinner, some cartoons, and me typing this.

I wouldn't call it an uninteresting day, considering that I had hair when I woke up.  It was a good day.  There wasn't anything great or terrible about the day.  I'm tired and I ache, but I'm home.

My anxiety just got the best of me, while typing this I am finally really having a hard time dealing with the boys.  It's 9:20, they've been in bed for 20 minutes doing one thing after the next to keep themselves awake.  Hopefully, with some practice and effort I can relax and learn to mind their poor behavior less.

It's still been a good day.  I just need to learn to manage the end of the day better.  And now I'm going to apologize to Emily and the boys for being rude.  They're awesome, I'm in a bad way.  Surely we'll find some harmony between the two.

Here's the photo for today, my new shaven state.  Max also wanted you to see his Finn shirt, so there are two pictures:

A Slow Sunday

Granola for first breakfast, Popeye pancakes for second breakfast, delicious Emily-made omelet for lunch, two sandwiches for second lunch, and nothing yet for dinner.  That's the day in food.

Today I visited the AF Hospital twice, first for a cross and match, then for platelets.  All went well.  Medically the day has not been interesting, which is great.  I am extra tired today, no steroids.

This morning I spent time teaching the boys how to aim a toy gun accurately, more time than you'd think you could spend doing such a thing.  Max prefers his luck.  Jonas has improved his aim with practice.  Afterwards we pulled down some of the family albums.  Again, Max wasn't interested.  Max played Minecraft.  Jonas, Emily, and I had a great time thumbing through our memories.

Emily and the boys have headed off to her parent's house for dinner.  It's a special Max birthday dinner.  I've spent the evening completing the bone marrow transplant guide.  Who writes a 200 page guide about receiving a bone marrow transplant?  It would be sufficient to provide a leaflet stating:

This is going to hurt.  It will be hard on your family.  You may soon wish you hadn't done this.  Brush your teeth four times daily.  Drink three liters of water daily.  Consume as much protein as you can.  When you can't eat, we'll feed you through your central line.  Walk and perform basic exercises inasmuch as possible.  You're going to feel tired after this for a year or two.  Thousands of issues may rise up to harm or end you, we'll do our best to deal with those issues.  Good luck!

Anyhow, I'm informed.  I'm also tired and sweaty.  For some reason it's 77 degrees in the house.

Emily lost again at San Juan.  That's 5 for 5.  She'll beat me.  The hunger to beat me is upon her.  She'll probably try to get in another game tonight.  Emily is the best.  She takes good care of me.  And I love her.

Today was a good day.  It is great to be home.

The picture of the day, something you don't often get to see.  A redheaded Emily with her two boys and two puppies.  It's worth it to break the blog format just to have the picture this large:

The Saturday Evening Post

We've had a good day. My anxiety kept creeping up and threatening the day but it didn't win.


Breakfast was granola and silk milk. Later Tim and I talked on the phone. Then it was delicious omelets for second breakfast. Emily makes the best omelets I've ever tasted. Shortly after omelets Scott Ashby came to visit. And the first thing he said is "when is the last time you talked to, Tim?" I said today and he said he's been trying to talk with Tim for a week or two. I'm using this as a hookup paragraph, all about food and friends: Tim, call Scott.


Scott was able to hang out for a few hours and was nice enough to take Jonas back to his house for a few hours to play with Andrew. Andrew and Jonas are good friends, almost the same age, we went on the recent Disney cruise with the Ashby's. It was great to talk with Scott and Emily. Max was even pretty well behaved the whole time.


The conversation ended with me heading off to the AF Hospital for a blood test. The result of this blood test tells me that I'll be receiving platelets tomorrow, at the AF Hospital.


Too much time was spent working in the office today. Max and Jonas built a fort in the front room, which they are presently sleeping in. But I don't feel like I was able to help with the fort as much as I wanted to. I'll try to focus more on quality time with the boys tomorrow.


Two hard drives are dead in my basement server, so I ordered two drives off newegg. Hopefully I'll be able to replace those before returning to the hospital. That's my media server, all of the entertainment in my house runs off it. This computer is vital if you're stuck in bed all day.


Emily read the "welcome to the bone marrow transplant world" book today. It's a rough read. I don't recommend it. We are alright though. Both of us have left reality behind for now. We live in a world full of hope and optimism. Reality serves no purpose at this point. Everything will either work out well, or it won't. Worry and fear won't change that. Embracing change and keeping a positive attitude, despite the hell we are passing through, is the only reasonable course of action. We're both drinking as much of the hope and optimism kool-aid as we can.


That's the day. I'm about to eat a big meal and go to sleep. I'm still working out carefully, eating as much as I can, and sleeping well in hopes of keeping my weight up. I'll give a weight update the next time I have some idea where it is, which is only on days I'm forced to fast.


The picture of the day. Jonas, Andrew, and Megan in Puerto Vallarta. We are in a taxi returning to the cruise ship:

At Home

It's 8:34pm.  Jonas is working on homework and Max is in the bath.  Emily is keeping them on task.  I have been sent off to write this post.  It has been a very good day.

We'll start with yesterday.  I have no neutrophils.  I haven't had any for over a week.  I don't just have a few.  I have zero.  Last time they wouldn't send me home in that condition.  I'm not sure why they let me out this time.  Dr. Ash, who is also my favorite, wasn't happy that they were letting me out.  She thought I'd lobbied for it.  This isn't true.  The head Dr. had been telling me for a week that he was going to have me sent home.  She didn't want to overrule him.  So here I am.  I've been given plenty of precautions to avoid public places, going outside, letting anyone in my home - especially anyone who might be sick, and to watch for any signs of illness.

The day started with a spinal tap just before noon.  I stayed flat on my back until 3.  There were a couple of meals in there.  The hiccups didn't get me until later in the day, luckily; they cause a lot of lower back pressure.  As it turns out the dexamethasone is the hiccup causer.  Emily arrived at 4:30 and drove me home.  The checkout process was pretty painless, we were on the road by 5:30.

There is a funky lump where they did the tap but I'm not worried about it.  No headaches, no strange colors.  Lidocaine is known to cause such swelling.  We'll see.

Being at home and on steroids has been wonderful, plenty of energy.  Tomorrow is my last steroid day.  That'll be rough afterward.  You feel really tired until the adrenal gland kicks back in and your body adjusts to the regular 5mg of steroids vs the 45mg they're feeding me.  Still, much less painful than what we did on the last go around with prednisone every day for 6 weeks.

Today I did vacuuming, dusting, dishes, laundry, scrubbed the kitchen floor on hands and knees, scrubbed down every surface in the house, did a variety of exercises, ate a lot of food, administered IV medications, gave myself a shot of neupogen, and did homeschooling with Max in the morning while Emily was gone to work.

In between the doing there were several good visits.  Gavan and Amy stopped by for lunch and we managed to get Gavan to stay much longer than he should've.  Diane, my mother in-law, and Bethanie came by to drop off some dinner.  It was a by request meal, no less.  It was delicious, funeral potatoes, chicken, and salad.  My sister Jennifer came by to visit just before dinner.  She took the boys to visit her close friends and a couple of dogs.  Max loves dogs, Jonas likes dogs.

It's been nice to have the company, the energy, and the free time to eat dinner with just Emily (thanks Jenny).  I'm out of energy now.  But it has been a great day, just like my days were two weeks ago, before relapse.  My natural anxiety level is high.  With no immune system it is a bit higher.  I wasn't able to maintain my cool as well as I normally do today.  There weren't any incidents or anything, I just wasn't as relaxed as I would like to have been.  Emily stepped in to buffer a few times.  It's all good.  Emily is wonderful, she will save us all.  If that's not the case, panicking may as well commence now.

For the curious: I have another 29 days of the first cycle of the Hyper-CVAD protocol left, this is the chemo.  I have no idea how many of those days will be spent in the hospital, at least 5 will.  If I'm lucky I get to be out for 8 more days.  That's when the B leg, which lasts 21 days, starts.  The medicine they give during those first 3-5 days requires that I be admitted to the hospital the entire time.  Sometime near the end of the 29 days I'll have another bone marrow aspirate to determine if they are comfortable with the amount of success they've had with the chemo.  If they are comfortable with my progress we will begin the bone marrow transplant process.  I will not be let out of the hospital during that process.  I will be in for at least 12 weeks.  Some people are in for much, much longer.  So, if all goes well, I'm in and out of the hospital for the next 30 days and then I'm in the hospital for no less than 90 days.  That puts early out at the beginning of July.

That, my friends, is the update.  It is now 9:08.  I have more to share but I don't have the energy to write now.  Feel free to ask questions you may have in the comments.  I may be missing obvious questions, I'm glad to answer them.  I do reply to comments.

The picture of the day, a twofer:  The boys visiting canine friends.

Home

Blogger does not like my phone. I'm home. If I'm lucky I'll be home for nine days. I'll report further tomorrow. In even bigger news, my sister Jennifer is a perfect match. I'm very excited to know I might have a chance with transplant. Drugs are kicking in, writing on phone is terrible.