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I’m a Bad Blogger

I’m a bad blogger.  A bad, bad blogger.  If blogging was my job, I would have been fired weeks ago.  My advertisers would have left me, my followers would have written me hate mail, I would seriously be questioning my place in the blogosphere, and I’d be broke.  But thankfully, blogging is not my job, because I just haven’t felt like blogging lately.  I’ve been pretty “meh” about the whole thing.  Maybe if this blog was about recapping HGTV shows, I might have been more into it.  I could write every day about the Property Brothers, and how even though I love them, I get enraged every time they use a hideous modern tile on a fireplace, which is 95% of the time.  Fireplaces are supposed to be brick!!  I could write essays on how the couple from “Desert Flippers” is just the very poor man’s version of Chip and Johanna Gaines from “Fixer Upper”.  But I appreciate them because they made me love Chip and Johanna all over again!  I could write haikus about “Flip or Flop” and how I couldn’t stand Tarek and Christina at first, but now I kind of want to be friends with them.

A Flip or Flop Haiku

You flip houses in 30 minutes

I only care about the last 5

I like the reveal

 

Is that a haiku?  God, I need to get back to work.

But sadly, this isn’t an HGTV recap blog.  It’s a blog about me.  At some point I think I got sick of talking about myself and just got really turned off by the whole idea.  I also ran out of things to say.  I’m surprised that I wrote as much as I did in the hospital, considering how much worse I was feeling then.  I think I just had more things to report on and had more thoughts about those things.  Since then, there really hasn’t been much going on, unless you consider sleep to be a thrilling topic.  I did manage to write 3 blog posts in the last month but hated all of them, so they never saw the light of day.  Every other time I thought about writing, I just said “meh” and went back to watching House Hunters International or Beachfront Bargain Hunt.  What’s the difference now?  Well, I just blew the dust off my calculator and worked my first full day at home on Wednesday, so I figure I really have no excuse not to write an update.  So here it is:

I came home on Day +13 and its now Day +65.  I can’t believe how fast the time has flown!  Though, I have been sleeping pretty much that whole time.  Well, that’s not exactly true.  But I have been sleeping A LOT.  A lot, a lot.  On most days I sleep until 1 or 2pm, then sometimes nap again in the late afternoon.  On days I go to the hospital, I pretty much pass out as soon as I get home.  Recovery is sleepy business!  But since I am back to working at home a little, I am trying to force myself back onto a more normal schedule.

Other than being tired and sloth-like, I feel pretty good.  I haven’t had any major complications since I’ve been home.  I was initially going to the hospital every day for checkups and treatment, but now I only go twice a week, which is great.  The only treatment I receive at the hospital is a magnesium infusion.  All other medications I can take at home.  I am down to 25 pills a day which, really, isn’t that much.  Sully and I often walk the almost 2 miles home from the hospital, we go for walks in the park, do light yoga twice a week and we even went to the beach for a few hours last week.  Guess what I did at the beach?  Yep, I slept the whole time.  But it was an ocean breeze filled nap.  I have also been cooking quite a bit.  At first, I needed to take breaks, but now I can pretty much handle a whole meal like normal.  Cooking as an endurance sport; I can really get behind that.

On the transplant front, things couldn’t be better!  My blood counts are all up and in the normal range (chart above).  I haven’t needed a blood transfusion in 53 days!  I had a bone marrow biopsy a few weeks ago (You haven’t truly lived until you’ve had someone stick a hollow needle into your hip bone while you are awake.  It’s awesome!), it showed that my bone marrow is 100% my sister and 0% me, which is exactly where it should be.   All evidence shows that the transplant is working beautifully!  I honestly think it is the coolest thing.  I know it’s been the plan all along, but to see it in action is just so awesome.

In other medical news, I got my port and lumens removed about 2 weeks ago.  It was a horribly painful and violent experience, where they essentially yanked the port out of my body after it had been in there for 6 weeks (sans medication), but it only lasted about 20 seconds, so it was, thankfully, over very quickly.  It feels great to finally have the port out and feel like (and shower like) a normal human again!

So I only have 35 more days until Day +100 when things can start to get back to normal a little bit.  At that point I can eat a salad!  Ugh.  Go back to working at the office.  Drink wine!  Eat at restaurants.  All the good stuff that makes up a normal life.  For me, anyway.

I’ll try to update the blog more often now.  But please know that I am doing very well.  I really appreciate everyone’s good thoughts, texts, cards and emails.  And if you got in touch with me and I haven’t responded yet, I’m sorry, sloths take a while to do things.  I will get back to you soon.

Love to you all.

Getting Platelets

Platelets, Ports & Hives, Oh My!

So today is my admission date and also the day I received my port.   This official name for this port is a Triple Hickman Line or Central Venus Catheter.  My doctor actually knows Dr. Hickman who created this port for children.  The line was so incredibly effective, that it is now the standard of care in transplants. 

The purpose of the port is to for me to be able to receive medications/treatment, hydration, and to serve as an access point for taking blood, which will be done at least daily.  This avoids me having to get an IV every time, which I am totally in favor of.  The line is threaded into a vein in my chest and has 3 lines hanging out of it where they will hook up my meds or draw blood.  These lines are actually called Lumens.  My sisters and I were saying the other day how pretty the word Lumen is.  Like if a restaurant was serving a Sparkling Lumen Cocktail, I would order that.

Placing the port in my chest is a minor surgical procedure.  However, for me, even minor surgical procedures require a platelet transfusion, which I got this morning.  I have received at least 10 platelet transfusions so far and only had a reaction to the first one.  I got a tiny little hive on my chest.  Not a super huge deal but one that has to be addressed. I was given Benadryl and the hives subsided.  Because of that little hive, I now receive Benadryl every time I get a transfusion.  It’s at the point where I don’t even mind getting them because I know a little nap with coming them!

The protocol was no different today; I received my Benadryl and got my platelets.  However, as soon as they were done, I started to get really itchy and notice hives on my chest and neck and all over my back.  Yucky and itchy!  So everyone was quickly alerted and more Benadryl was ordered, IV this time. 

Hives

Hives

The hives eventually subsided but the port placement that was supposed to be at noon is now at 4PM.  This is important to note because I hadn’t eaten since 10PM last night!!  So by the time the procedure was done and I woke up from my crazy Fentanyl and Versed dreams, and declared fit to eat, it was like 7PM.  I was ready to start munching on one of my lumens!  Luckily the sweet nurses took note of my starvation and ordered me some food, which of course, was the most delicious thing I have ever eaten in my life.  They also have Marino’s ices on the menu here!!  This place rocks.

So as I type this, I am just here, hanging out with my lumens, waiting for my room assignment. 

Port & Lumens

Port & Lumens

Sully went to run home to pick up the rest of my stuff.  We brought one suitcase with us this morning, but didn’t want to hump the rest of it around the hospital all day. You know you’re in for some shit when you check into a hospital with a suitcase, some other bags and your pillow.  Boo.  I’m ordering a Marinos ice every single day I am here.

Marino's!

Marinos!