Wednesday, September 15, 2010

High as a Kite and Strapped to a Ball...unrelated events

Be forewarned: I have two Darvon and an Ambien in me....this post could be hilarious to read tomorrow...

Today was my first day of home infusion therapy, which was pretty weird considering this is the field that my Dad works in. Aside from a minor (major, if you ask Pappa) hiccup last night when we paged the pharmacist on call to ask about the delivery of my pump, which was promised yesterday, and this pharmacists buttheaded refusal to return my call (jerk), things went off without a hitch. And I think the whole thing was pretty darn cool. Because I am obsessive about staying hydrated and am apparently a BMT superwoman at the moment, I only have to receive magnesium (w/o hydration...I am adequately that...just that no one told my ENTIRE SKIN SURFACE) through my CVC from this cool little ball. Check it:
Nifty, no? The ball is the actual pump and infusion all in one futuristic package (even though Pops tells me these things have been around forever, who knew?!). Once I flushed my lumen and hooked this puppy up, it contracts itself to infuse the medication over 2 1/2 hours. I forgot to take a picture of what it looked like when it was all done but basically the outer bag was flattened and inside was a pole that ran from white cap-thing to white cap-thing (on of those is a filter). No risk of air in the infusion or line because it's like a vacuum. I could walk around the apartment....rather, sleep sprawled in the recliner....until the thing was done. Then disconnect, flush and go on my merry way. Pretty fucking cool if you ask me. The case manager said that, as long as my counts stay FAB-u-lous, I can have this Saturday and Sunday off from clinic too. BALLS ON THIS WEEKEND! (sorry, sorry, I couldn't resist).

For whatever reason today, my noggin' spent most of the day feeling like a tribe of gnomes are trying to icepick their way out of the top of my skull and are camping in their free time in my sinuses. Allergies? Baby cell party (no keggers in there, mmmkay guys)? Tension headache? Probably all of the above. Out of sheer stoic bullshittery I refused to take a pain pill until an hour ago (ok, TWO) when I thought I was going to need to lay the smack down on those little gnomes. Part of my attytude about the pain pills is that I'm not totally convinced that they do much more than make me hhhIIIIgghhh. Headache is still here, I just don't care as much as I did an hour ago. All I know is that methinks a friggin' Tylenol and a Sudiphed would make this go away....however, I'm not interested in having a seizure or start bleeding internally, so I'll stick to the narcotics. OH, and the Place....of Wellness (ellipsis included in actual title) at MD Anderson offers a variety of relaxation, education and exercise classes and one of those is self-massage. I'm thinkin' that would be a good choice here, also I can apparently call and schedule (with doctor's approval) a massage there. Sweet:).

There are lots of things that happen to your body post-transplant, many of them are really gross and sufficiently uncomfortable or painful. Yep, have been discovering this brave new world of yuck. All I will say is that breathing helps HUGELY when the yucko ouchie stuff happens. This is momentary and there are a billion OTC things to help so I'm just gonna keep gritting my teeth and breathing through it until it goes away. Or maybe I'll scream and cry...we'll see what happens....

These things could very easily ruin one's day, but I'm trying my damnest not to let it. Wanna know what helped? The HEAPING PILE OF LOVE that arrived through the mail today. Dear  dear Chestnutwold folks, thank you so much for the numerous cards, it was so humbling and touching to read your messages and feel close to you today:) A giant box of Tastykakes arrived that P and I are going to bring up to G9 tomorrow morning to say thank you to the medical team up there, some Philly love for them! Also, my new headgear came and I'm in love. IN LOVE! You'll just have to stay tuned until tomorrow to see them (mostly because I'm insisting on being able to slap on some cosmetics to go with 'em). Oh hell am I excited!

Thank you to everyone who joined me on Ustream last night, it was so cool to be able to interact with you all and get a touch of home:) Sorry for the late broadcast to those of you who need to hit the hay earlier, I'll start earlier in the evening next time:) Missing and loving all of you so much and thank you for ALL of your love, support, gifts and laughter. You are blessings wrapped in blessings.

Much love:)


  1. Hi Laura: Nan here. I have been devouring your blogs. All of the things that you continue to go through remind me of the stages a child goes through on the path to adulthood. Some of those stages are wonderful BUT some of them, oh boy. You just thank God that it's only a stage and will soon pass. At least you have drugs to help the process. It was wonderful seeing and talking to you on skype and I'm looking forward to catching up with you soon again. Keep the good attitude. Love you, Nan

  2. Hey Laura I am glad you are going to have a few days off. It is great to hear your numbers are FABULOUS...just like you! I am sorry about the lil' gnomes...damn them!!! UGH!~ miss ya and sending the vibe Philly style~Christie