Sydney Hurt Her Finger
When the kids were here the other day, they were playing with one of the port hole doors where some bins are stored (see pic of Tucker below).  While playing, Tucker shut Sydney’s finger in the door which led to many tears.  Today the kids stopped by again and Tucker played with the door once more.  Of course Sydney wanted to remind everyone that her finger still hurt so she showed it to us.  I’ve been waiting for this day for quite some time.  I didn’t realize she hurt “that” finger, so I was a bit unprepared, but the moment was still as good as I imagined.  She raised her hand and then raised her middle finger to show me her boo-boo.  I love the innocence of a child.  All she wants to do is have her wittle fingwer kissed and I hope it’s a long time before she learns the meaning of a raised middle finger.  Now that I think of it, I’ll probably need to keep her away from Brian and Corry.

Camp UMAC
Today Camp UMAC kicks off.  Camp UMAC is when the kids go to Uncle Mark’s and Aunt Chelle’s for a few days each summer.  The kids love it and mommy and daddy like the break.  Camp UMAC has been scheduled for quite some time and didn’t take into account Daddy’s cancer schedule.  Granted, the timing really couldn’t be better.  I’ll be discharged on Saturday, and the kids will be back on Sunday.  I’m really not away from them for much longer than I would have been and the time away allows Lindsey to get things ready for my return and for me to have a bit of time to adapt to life back home with an IV Pump.  The kids stopped by today on the way to Camp UMAC.  Sydney didn’t want to come into my room because that was just delaying her trip to camp.  Eventually she did come in, and we obviously got the pleasure of seeing her finger boo-boo.  After 30 minutes or so, I got 3 sets of hugs and kisses goodbye and the kids headed out to Camp.  Have fund kids!  And if you want to stay for an extra session of camp, that is fine with us 🙂

Two More Sleeps
It’s hard to explain time to the kids.  Whenever they know something is going to happen, they always think it will happen that very day.  As we get closer to the date, we’ve taken to explaining the timing of things in terms of how many more times they need to go to bed and wake up.  It also ends up being an incentive to go to sleep, which is a bonus.  I will be discharged on Saturday, so I only have 2 more sleeps in the hospital.  I can see the light at the end of the tunnel (which is hopefully different that the big white light you are supposed to walk towards).

Continue reading “Sydney, What Do You Want to Say to Cancer”

My Dose Changes Tomorrow
So far I’ve been receiving 9 mcg/day of Blinatumomab.  Tomorrow my dose will be increased to 28 mcg/day.  This is the standard protocol for Blinatumomab.  If all goes well, all my future doses will be 28 mcg/day, even when I start my 2nd cycle.  The 9 mcg dose it to allow my body to adjust and make sure I don’t have any bad side effects.  While my dose is tripling, my body should be somewhat used to the drug now so the increase shouldn’t be accompanied by any new side effects.  Of course some people did experience new side effects, but they were in the minority.  And since I’m not a minority, I guess I should be ok.

7 Days Down, 2 To Go
Today was my 7th day of Blinatumomab.  I need to be observed for two days on the 28 mcg dose and then I’ll be allowed to go home.  I’m getting a bit stir crazy at this point.  I’m usually in my room for 23.5 hours of the day, which incidentally is more time in a single room than the federal prisoners at the Supermax spend (granted, I can at least get out of my “cell” anytime I want).  I’m not as tired anymore, which means I’m not taking naps.  While I don’t feel 100%, I do feel pretty good all things considered.  I still have some headaches, but those are easily managed with the Oxycontin.  I’m definitely ready to go home and today Home Care stopped by to educate Lindsey and I on what will happen.

Continue reading Taking It Up a Notch

A Weekend Update
The weekend wasn’t much fun.  I had a fever off and on and was pretty tired the whole time.  I also had low blood pressure on Sunday, which could be a sign of Cytokine Release Syndrome.  Thankfully the BP came back up with fluids.  Along with the low BP, my heart rate got up to around 130 for awhile, even though I was resting in bed.  I also had some headaches and nausea.  All these were managed with medications.  Granted, the meds could be part of the reason I was so tired.  I was getting Oxycontin, Ativan, and Phenergan.  Not exactly a cocktail of uppers.

Today Has Been Better
Today has been better.  Not great, but better.  I can tell it’s better simply because I got out of bed to do something besides pee.  After waking up this morning, I sat in the chair in my room for about an hour.  Probably doesn’t seem like that big of deal, but a change of scenery was nice.  I mean, I’m still staring at the same 4 walls of my room, but I’m doing so from a different angle.  It’s the little things that help you hold on to your sanity.

Speaking of rooms, I haven’t been out of mine since Friday.  Just not enough energy to get up and walk around a bit.  Hopefully some of that will return.  We’re still not sure if I’ll adapt to the medication and have reduced side effects or if I will continue to have side effects on and off over the 28 day administration.  Apparently both happen.  I’ll be ok with the side effects I’ve had so far as long as we can manage them at home.  I don’t really want to be in a situation where we are figuring out if we need to call someone or if we don’t.  To Dr. Cripe’s credit, he gave me his personal cell phone to text him if I have any questions in the hospital or out.  He even texted me on Sunday to see how I was.  I love Larry 🙂

Continue reading Coming Up for Air