Friday, February 28, 2014

Day +2.

It's hard to describe not finding the time to write when you are trapped, effectively, in a hospital room with a laptop.  Not really "not finding the time" as just not wanting to, I guess. 

Feeling OK, although getting more fatigue and some slight nausea tonight.  Mostly getting a tad stir crazy, missing my daughter more every hour.  Struggling with what I'm doing here, what's happening to me, the looks of sadness and incredulity I seem to get from everyone for a variety of reasons.

Family has started coming into town to visit, which is of course appreciated.  I think they expect me to look more like something out of Schindler's List than I am, though.  Hair's still connected and they have me on so many drugs that make you retain water I feel like the Titanic.  People don't know what to say, and I get that.  Been dealing with that reaction since this all began.

Trying to keep my spirits up -- the first few days it wasn't too bad but there's just no way to sit here, day after day, hour after hour, through the tests and rounds and being woken up and the drugs and the IV and not start really figuring out where you are in life.  And where I'm at tonight is not home with my wife, and trying desperately to remember what it's like to feel my daughter's breath on my neck when she gives me a hug.

I want to go home.  I don't want to have cancer anymore.

Wednesday, February 26, 2014

Day Zero.

Not going to write too much tonight -- tired and it's been a long, but relatively pleasant, day.  The transplant went fine.  Had a bunch of fatigue afterwards most likely brought on by the cocktail of drugs they were giving me while doing the transplant (benadryl, etc.) but had a nice dinner, Skyped with Ariana and Amy, talked to my folks and have been just taking it easy and trying not to worry about what's coming next.  I guess the chemo starts to kick in pretty soon so it's a waiting game now.

I'll try to post some pics tomorrow and go into more details, just sort of tired and been inside my own head about all of this too much today to want to go over it all here.  Very surreal experience.

Tuesday, February 25, 2014

A Day of Rest.

Had nothing scheduled today as we're at -1 and counting.  They use that scale here if I hadn't mentioned it ... -2 for chemo day, day 0 for the transplant, etc.  Amy said she'd get me a few Gigi's cupcakes to celebrate my "new" birthday tomorrow.

A nothing day here still consists of tests, vitals every 4 hours, and several drugs taken prophylactically (sp?) for nausea, viruses and bacteria.  I'm also hooked up to a constant IV so I have to pee constantly -- I'm sure there's some value to that but with all of the other information I've had to absorb it's simply slipped my mind.

Had a phone session with the therapist back home today.  She emails me to check in quite a bit, which is nice.  Our session went fine and was only half the alloted time -- quite frankly I'm not really that upset or torn up about any of this.  I'd attribute most of that to the LexaPro, a bit of whitewashing from the staff here (not in a malicious or misleading way, they just tend to focus on the best possible outcomes for obvious reasons) and the fact that this is all so fucking surreal.

Monday, February 24, 2014

What's For Dinner ...

Let's Get Ready to Ruuuuuuumble ...

Typing this from my hospital room; checked in around lunchtime today ahead of doing my chemotherapy tonight.  The drug of choice this evening will be Melphelan, which is categorized as a high-dose chemotherapy.  They do cryotherapy along with it as well, which is a fancy way of saying I chew on ice for 30 minutes before the infusion, during the hour-long infusion, and for 30 minutes after.  Apparently this significantly reduces the risk of developing the mouth sores common with this chemo regimen.

Said goodbye to Ariana today.  I think that will be the hardest part of this in most ways.  I can handle the pain, the illness (at least I believe strongly that I can) but missing her ... man, that's hard.  I was breaking up last night doing her bath and reading her a bedtime story as I realized it's the last time I get to do that in person until almost mid-March.  Seeing as how two nights is the longest I've ever been away from her this will be the true test of fortitude.

Jeff, my wife's step-father, got into town Saturday night.  He's so good with Ariana it's almost laughable and she loves him, so I know not only is she in good hands but that it will take a huge load off of Amy's shoulders.  We went to Fogo de Chao last night as a treat and a "last supper" sort of meal, which was awesome, and followed it up with a good breakfast this morning at Over Easy North.

Today I do a ton of testing so they can make sure I'm not infected with anything, and then off to chemo.  Wish me luck.

Thursday, February 20, 2014

Stolen Naps.

Ariana has skipped her naps for the past two days.  I, on the other hand, have taken one for the past two afternoons.  I think it's partially due to the Neupogen leaving my system and partially due to increased activity -- we're doing a lot more lately to maximize my fun time with Ari, so the last several days have been a whirlwind of eating out, going to the zoo, going to one of those bounce houses with wall-to-wall trampolines, etc.

Nothing much new on the doctor front.  We met with Dr. M. for a final pre-admission office visit on Tuesday.  He reiterated that everything looks good, called me an overachiever for collecting enough cells for three transplants, and walked us through the tour de suck (my phrase) of how I'll be feeling in the hospital and when.  Apparently 8-11 days post transplant are when it's going to feel the worst.  I'd have to check my schedule but given my luck in the last year that's probably when I told most people to visit.

On the bright side he lightened up on the "how it will be post-transplant" speech and said I should be fine, just avoid sick people and buffets.

I'm scheduled to get a PICC line in my arm (maybe they always go there, no idea) on Friday, and then I'm admitted to the hospital Monday.  Crazy, and kind of scary.

Missing Mischief and Trouble a lot lately.  It feels so odd, not having cats, and hits me at weird times.  I must be dreaming about them or something because I tend to feel the worst about it when I first wake up.  I've lost a few cats over my life but have never felt like this before; I mean I've always been crushed, but this sense of loss is truly overwhelming and it's been a while now.  I have a digital picture frame that I loaded with photos of Amy and Ariana and one of me and Mischief at the hospital before he was euthanized, and it breaks me down every time it flicks across the screen.  I think I see him curled up on the bed for a moment one afternoon, but it's just my black fleece.  I keep expecting to find him in my laundry basket, or to come running when I open something that crinkles or has a noisy lid. 

I had hoped that being in a new surrounding like this, instead of being at home, would alleviate this to some degree but it isn't.  On the bright side Dr. M. prescribed me some Xanax to help me sleep through the night again (stopped doing that in the last week) so at least I have another pill to combat it.

Sunday, February 16, 2014

Quiet Sunday.

Got another 4.6 million stem cells yesterday so they pronounced me finished and let me get my catheter line taken out today.  Wasn't too painful although I probably should have skipped looking when the nurse asked me if I wanted to see it.  Shnikes.

So 10 million cells harvested, well above the 6 I was shooting for.

Had to take it easy after I got home because with a borderline platelet count (borderline as in any lower and they would have given me some) this won't heal as fast and can be serious if it rips apart or gets infected.  No lifting heavy stuff, no bending over, etc.  No showering either until at the earliest tomorrow morning, which is getting old.  Need a shave as well.

I only have two more appointments before I go into the hospital and start the chemotherapy at this point -- a pre-admission office visit with Dr. M. and to get my PICC line installed.

As it gets down to the wire I'm getting more and more nervous about everything coming up.  As with previous milestones in this treatment, things are about to ratchet up the seriousness quotient again. 

Woke up this morning having thoughts about Mischief as well and how much I miss him, which hasn't really helped either.  Wish he was here.

My thoughts are disjointed, sort of like this entry.  Trying to figure out what to do with Ariana this week since when I go into the hospital a week from tomorrow we won't see each other for almost 3 weeks (she can't visit me).  Maybe we'll go to the zoo or something -- like to maximize my time with her, and I need to write her another letter this week too.  Amy's step-father gets into town Saturday which will be great -- not just to get some help, but we've got a fun dinner out planned (Brazilian steakhouse) and I know Ari will love seeing her grandfather.

Sad today, for whatever reason/s, and just can't shake it.  It's been creeping up slowly but surely lately as I get closer to going into the hospital.  It's easy, even when laying there being harvested, to forget what you are there for and what you are doing.  As I've written before, however, when the reality comes crashing back it can be pretty brutal.  Not sure there's ever any escaping that, any normalcy to be found here if I look too hard. 

Just another cancer patient looking out from inside.

Saturday, February 15, 2014

Last Day Harvesting (hopefully)

So yesterday was pretty mellow.  Harvesting doesn't hurt, you just lay there, and with a laptop and a good wifi connection that was fine.  Relaxing, really.  Unfortunately I needed 6 million stem cells and got 5.65 million, so I had to come back today for another session (and another Neupogen shot).  Only real bummer is now I won't get these damned lines out of my neck until tomorrow at the earliest, although I'm hoping they can do it later today if the labs test my collection bag in time.

Friday, February 14, 2014

Here We Go ...

My labs came back this morning and there's enough stem cells in my peripheral blood to start harvesting, so a' harvestin' we shall go.

Sorry, I got a whole 3 hours of sleep last night between the lower back pain from the Neupogen and having the catheter lines and dressing on my neck.  

Thursday, February 13, 2014


Sitting in the waiting room at the hospital to get my catheter line stuck in my neck. Already had labs done and my daily Neupogen shot ... Had to double-up the Oxy last night just to get to sleep.  The pain is lower back and hips this morning -- walking and feeling like an old man.

I know I made the right decisions about having Amy and Ariana here, but having to go to appointments like this next one without Amy's hand to hold is kind of tough on the soul.  I don't want Ari around here though and she can't go to a lot of these anyhow.  Amy found an indoor play place for her this morning and while I'm lonely, it makes me happy to know she's going to be somewhere giggling instead of in a waiting room.

And I may be able to parlay this into an In-N-Out stop on the way home.

Talked to my mother yesterday ... I didn't even get into it here but my parents were in a head-on 50 mph collision on 285 several days ago when a propane truck heading the opposite direction decided to turn right in front of them and then even more inexplicably stopped.  My dad fucked up his back but mom fractured both legs and will be hospitalized for quite a while.  Her surgery went well thankfully, but they've definitely got her on the good stuff drug wise.

Wednesday, February 12, 2014


So yeah, as forewarned was possible the Neupogen shots are causing severe pain in my upper legs and hips.  Thankfully Dr. M. prescribed me some just-in-case Oxycodone which has taken the edge off and got rid of the jaw pain, but legs are still driving me nuts.  Grrrrrr.

Get my catheter lines in my neck tomorrow morning.  Because what else could be more fun on a Thursday?

Took this this morning on the way to get my shot.  This is the hospital in Phoenix where the majority of this stuff gets done to me.

Tuesday, February 11, 2014

Enough With the ...

... shots in subcutaneous fat.  Seriously.  At least these weren't in my stomach like the weekly chemotherapy shot of Velcade, but still.  Two full syringes of Neupogen in your arm is a shitty breakfast.

Thursday, February 6, 2014

A Few Days In.

It's Thursday night, and taking a moment to get caught up here before dinner.

Had most of today and yesterday off after a few days of tests, re-tests, various meetings, etc.  A buddy from Parker happened to be out here Tuesday for work so we went to get some sushi, which was nice, and last night a longtime friend of my wife was out here from Colorado Springs so she came over to the villa for dinner.  I still need to hit In n' Out but it'll happen before I go into the hospital.  And Mastros.

Ariana has slept well the last two nights -- not so much the first 3, so that's good.  She seems to be teething a bit and that plus a new place was quite a bit for her to deal with.  She's still a lil' crabby but hopefully will get back to normal soon.  We all took a walk today -- probably mentioned it but Amy found a place that rented us a crib, stroller and some toys for her, so we busted out the stroller and got some exercise in.

Had a class today with a 15-year nurse in the program about the transplant.  No real news to me but was interesting.  Hard to believe this is really happening.  She went through all of the side effects and what to expect -- sounds like the chemo is going to fuck me up pretty good and then the week or two without an immune system is supposed to suck.  But they have wifi and an exercise bike sorta deal in my room, so whatever.  A few weeks of hell for several years of remission is a small sacrifice.

The manager here at the Normandie cut me a deal on March, so we're going to keep the villa for another month.  That gives Amy some freedom to leave things here if she goes home and to stay if she wants, and takes the pressure off of having to find a place to stay for 2-4 weeks after I get out of the hospital in mid/late March.

Doing OK mentally and emotionally for the most part.  As I get closer to the cell harvesting I feel a bit of walking to the gallows-ish though.  And I miss Mischief.

In other random news one of my best friend's mother died this week.  It feels bad being out here with that having happened, impotent to do anything.  And then I get a call today and my parents were in a head-on collision on 285 at 50 miles an hour -- a propane truck turned right in front of them.  My dad is bruised and my mother broke both her legs and has a compressed disk and is being monitored for internal bleeding due to the seat belt.  Guessing that means they won't be coming out when I'm in the hospital, which is a bummer.

Sunday, February 2, 2014

First Night in the AZ.

Got in about 6 pm tonight ... not a fun drive but not too terrible, and did 85-90 the whole way so it didn't take as long as it could.  The villa rocks, feels right.  Amy had found a place online that rented us a crib and a bunch of toys for the month so while I unloaded the car Ariana was tooling around the carpeted garage in one of those Flintstone-type red and yellow plastic cars.  She zonked out bigtime after a tiny dinner -- she didn't sleep well last night and woke us up at 11:30 pm for an hour so neither did we.

Drive down was fine ... we had snow all the way from Denver to Las Vegas, NM, but nothing too terrible.  We stayed in Amy's aunt's place in Santa Fe for the night and then did the rest of the drive today.  I drove the whole way, was just in the mood to floor it and zone out.

By the time we got unpacked and Ariana fed and tucked away it was too late to go get or cook dinner, so we snacked and said fuck it tonight when Maggiano's failed to pick up the phone.  Dicks.  The temptation to make an In N' Out run was almost too much but after a shower and with this nice big warm laptop on my lap I don't even want to get out of this recliner to grab my glass of water.

Will update more this week.