Tradition
This past Thursday night, I continued a tradition that started on December 5th, 2012.  I didn’t now then how long this tradition would last, and it changed a bit over time; however this time I carried out the tradition just as I did on that first night.  On that night I new I was going to be admitted to begin treatment for Leukemia.  I knew I would be away for awhile, although I didn’t know how long.  I picked up each of my children one at a time and told them that daddy would fight.  No matter how long it takes.  No matter how much it hurts.  I would fight and I would come back to them.

As they’ve grown older it’s a bit harder to pick them up while asleep, but I always touch them and have the same speech before I get admitted.  Thursday, October 8th, I carried out the tradition in full and picked each one up and held them in my arms.  Tucker, Daddy is fighting for you so he can see you grow up and we can be buddies for life.  Natalie, I don’t know how long I’ll be gone but I’ll be thinking of you and longing until we can play together again.  Sydney, it doesn’t matter how much this hurts.  It’s all worth it to see your smile and hear your laugh.  And after laying each one of them back down, I gave one final look and left the room.  Ready for the next fight.

Day -7
In the SCT world, the day you receive you new cells is day 0.  Any day before day 0 is a negative day and any day after is a plus day.  So yesterday was Day -7 and today is day -6.  Day -7 started off easy enough.  I checked in at registration and then went to Interventional Radiology to get my central line placed.  I got some good drugs, but not quite as  much as I though I would get.  Nothing hurt, but I could definitely feel the line getting pulled through and inserted.  After that, I was transported to the Bone Marrow Transplant unit to await my chemo.

Etoposide 
Etoposide isn’t my favorite chemo ever.  I mean, I don’t think I have a favorite chemo, but if I was going to rank order them Etoposide would be at the bottom.  In defense of Etoposide, I did receive a really really big dose.  My target does was 60 mg/kg, which would have been 6,540 mg.  Due to policy and not wanting to kill me, the actual dose was 5,530 mg.  In the video below, you can see the globs of Etoposide fall into the normal saline.  Kinda like a lava lamp, but without the good endorphins when you watch it.

Now, I’m no pharmacist but I did look up typical doses of Etoposide when it is used daily to treat different types of cancers.  The largest dose I could find was for consolidation treatment of AML and that was 250mg/m2/day.  I’m roughly 2.4 m2 so that would be 600 mg per day for 3 days, or 1800 mg total.  And I received 3 times that total amount over 4 hours.  Ya, bad things were bound to happen.

Etoposide Side Effects
Now in the grand scheme of things, these side effects weren’t too bad.  For awhile there I was sweating a whole lot and turning a lot in bed.  I just couldn’t get comfortable and every time I’d wipe my forehead, more sweat would instantly appear.  This went on for a bit before it started to subside and that’s when I felt the rumbly in my tumbly.  I’ve felt nasueous on chemo before so that wasn’t anything new.  You just hold on and try to think of other things.  I also find that if I snack on graham crackers or other items that helps.  But this rumbly was on a whole different level and added a brand new side effect for me.  As the kids would say, I pooked.  I was actually trying to pee in the plastic urinal when it all went down, or came up, so to speak.  I did a quick look a the toilet, which had a blue cover over it since I am getting chemo.  Nope, not gonna make that.  Then I looked down at the trash can that was already full of trash.  Nope, to much chance for blow back.  So I went with the 3rd option which was the sink.  And then proceeded to fill the sync pretty full with what was definitely my dinner.  I puked 3 more times that night.  Nothing too debilitating, but nothing to fun either.  So far today I’m feeling somewhat nauseous but not pukey, so that’s good.

Day -6
Aside from the puking that started day -6 and the nausea that has lingered, day -6 hasn’t been too bad.  Day -5 will be another rest day, because in the words of my nurse “when you get  a dose of chemo that big, you need 2 days of rest.”  On Day -4 we will start the total body irradiation. I’m sure I’ll have more fun experience to share from that.  Until then, I hope you all enjoy your Day -5 and make the most of it!

A Duck Dynasty Prayer
Well we’re off to a good start.  Or at least as good of a start as can be expected.  I know darker days are coming, but I also know no matter how dark those days get, your light can overcome them.  I am never in total darkness with you God.  Let me see your light and hold on to that glimpse of you.  As I toss and turn in my bed, let me realize it’s just for the moment.  And that your light will overtake the darkness.  Thank you for all the support we have.  All the gifts, all the well wishes, all the notes/texts of encouragement.  I thank you for it all.  As I battle these next days, weeks and months I know you are by my side.  Thank you for another day.

The Last of the Bone Marrow Bucket List
I’ve been able to do a lot of things since my SCT was delayed.  Now the life of my bone marrow is winding down and the bone marrow bucket list is shorter as well.  Tomorrow (Thursday) is my last day of freedom before being admitted.  At the end of this post are some pictures from the last few days of my Bone Marrow Bucket List and below are some pretty good “I love ice cream” photos.

It Won’t Be Long Now
Yesterday I found out the plan for my admission this Friday.  I will report to first floor admissions at 7:30 am.  After I check in, I’ll go to Interventional Radiology to get my central line placed.  This is where I get some good drugs to keep me sedated while they place the line.  After that is over, I’ll be taken to the Bone Marrow Transplant unit, which will be my home for around 4 weeks.  I’ll be given chemo at some point on Friday and then I’ll start radiation on Monday.

Wake Me Up When It’s Over
I’m not one to wish I could fast forward through life, but I wouldn’t mind a skip the next 28 days button.  The SCT is most definitely necessary, but also most definitely not enjoyable.  My biggest concern going into this is mouth sores.  I was lucky enough to only have to deal with them once before, and even then it was a mild case.  Some viscous lidocaine and regular doses of Dilaudid kept the pain at bay so I could eat soft foods.  However there’s a good chance the one two punch of chemo and radiation this time around will cause severe mouth sores.  Like I can’t eat so I get a feeding tube down my nose kind of mouth sores.  These are pretty typical during stem cell transplant and I’m not looking forward to them.  I’m sure plenty of drugs are available to help with the pain, and obviously they can keep me nourished with a feeding tube or TPN.  But all things being equal I’d like to be blessed with minimal mouth sores.

The Good and The Bad
There’s probably no good time to have an SCT.  There are some reasons I’m glad my SCT was delayed from 9/22 to 10/9, but there are also some down sides to it:

• Good:  I get to enjoy some fall weather.  Being admitted on 9/22 and out of commission for a few months means I would have missed being outdoors and seeing all the beautiful fall colors.  There aren’t to many colors yet, but it’s been good to enjoy some fall weather while I’ve waited for the new date.
• Bad:  I’m going to be in the hospital for Halloween.  It wasn’t guaranteed that I would have been out of the hospital for the earlier admission, but I definitely won’t be out now.  That means I’ll miss getting to see the kids in their costumes as they trick or treat in the neighborhood.  There are only so many years that the kids will love to dress up and let mom and dad go with them.  I’m really bummed that I’m missing one of those years.
• Good:  I mentioned a while back that the BMT Unit has smaller TVs.  The good news is they were ordering bigger TVs.  Now I don’t know if they’ve been installed yet, but I’d like to think that Kelly is hanging a TV in my room as we speak.  Perhaps she has also strung some streamers and decorated the walls too 🙂
• Bad:  I know I will have medical expenses in 2016, but I was hoping to get the major ones out of the way in 2015.  It’s likely that the delay won’t have too big of an impact, but it’s also possible I could have an admission or some treatments in early 2016 that would have taken place in 2015 if things hadn’t been delayed.
• Good:  You have to go to the dentist before an SCT and it had been a year since I had been to mine.  They found a very small cavity and got it filled.  If I wasn’t having an SCT, who knows how long I would have waited to go and how big that cavity might have become.

Goodbye Hair
Have you ever had a garden that you’ve painstakingly cared for?  Or perhaps some flowers that you planted, watered and fertilized.  Then one day a rabbit or some deer come along and destroy all your hard work?  That’s kinda how I feel about my hair and my beard.  For the last few weeks I finally had some good hair and a good beard going.  I don’t exactly style it every morning, but I do keep it trimmed and looking good.  Now the chemo is going to come and destroy my hair, just like a rabbit eats up your lovely garden.  I know the hair will come back, and I do laugh a bit when I wash my hair and see it all coming out into my hands; but losing hair seems to be a big deal to a lot of cancer patients.  On the plus side though my nose hair will fall out and I won’t have to trim it for awhile, so I got that going for me.

Should I Commit a Crime?
In a little over a week, I’ll have new bone marrow and new DNA in my blood.  That kind of begs the question on whether or not I should commit a crime and leave some blood evidence behind.  By the time they catch up to me, I’ll have new blood and they won’t be able to link me to the crime scene.  Although I guess on the downside if my donor commits a crime I could be linked to the blood evidence there.  This one seems to be a glass half empty or half full situation depending on how you look at it.

A Duck Dynasty Prayer
God, keep me sane through all of this.  Through all the ups and downs, be my constant.  I thank you for calm nerves and a willing attitude.  Help me to enjoy my last day before admission and then many more days after that.  Thank you for another day.

Yep, I’m Still Hanging Out
It’s kind of an odd paradox I’m in.  On one hand, I feel good and everything is going well.  I’m able to spend time with the kids and do things I couldn’t do over the summer.  You would think I’d want this time to last.  But on the other hand, without further treatment, my cancer will come back.  Not may come back, but will come back.  Guaranteed.  Take it to the bank.  So I need further treatment.  And further treatment means this time of feeling good must come to an end.

So the hard part is knowing I need further treatment and knowing I have to wait.  Acute leukemia patients aren’t used to waiting.  In many cancers you have to wait for an appointment.  Wait for a PET or MRI.  Wait for results.  With leukemia you can get a quick blood draw, see your life flash before your eyes, and then move on to treatment.  If you don’t move on, you’ll be dead in weeks, so it’s usually best if you do.  I know my time is coming, so I’m trying to enjoy my current state.  But truth be told, I’d rather just be admitted tomorrow and start the SCT process.

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