Tuesday, March 16, 2010

Updates from Infusion Room 5

Happy St. Patrick's Day! Or, as is the case here, Happy Blue Hair Day! Phil had some friends over last night and three of them dyed their hair to mark the commencement of mobilization. See the video at the bottom of this blog to see them in action!

Yesterday Phil got his Neostar Catheter placed. Beth has a picture of one on her blog, and Phil may want to show his off later on. We'll see. The cath will allow for easier stem cell collection, blood draws and chemo administration and this is also the site through which the stem cell transplant will happen. He said it's not too uncomfortable... and the creepiness factor is sort of over-ridden by the knowledge that he won't have to get poked so many times every week.

Today is Phil's Cytoxan infusion which is an all-day affair. We were under the impression, through no one's fault but ours, that the Cytoxan would be a simple infusion, we'd go home and life would proceed as normal until collection. However, it turns out he'll be on some heavy anti-nausea meds for a few days afterward and will likely be tired and somewhat out of commission until the weekend. His counts will also begin to drop at that point. We're at infusion right now and Phil received his Compazine, Ativan and Zofran to combat any nausea before it even begins. They just hung his Cytoxan, which will take two hours, and then we'll stay here for hydration well into the evening. Because of all the meds Phil is, in his words, "Soooooo tiiiiiiired." So he's cashed out while I pay bills, eat bagels and catch up on my Pottery Barn catalogs.

Tonight Phil will be sent home with a pump that is connected to his catheter. The pump will infuse fluids into his system throughout the night, and I'll have to wake him up every two hours to use the bathroom, since it's dangerous for Cytoxan to sit in your bladder. I got a tutorial on how to work and troubleshoot the pump since Phil will likely be too sleepy to notice if something goes wrong (which is unlikely). So between that and yesterday's class on how to flush his lines-- which we'll do three times a week-- and change his dressing-- which happens once a week-- I feel like a pro.

I'm heading home for lunch and to try and get the kids down for a nap in about an hour, then coming back to the hospital for the rest of the day. I asked the nurse if they could bring in another bed so I can take a nap too and she just kind of giggled. As if I was joking. Oh well. Thank goodness for free bagels and internet.

Updates to come as events warrant!




Best of luck. You will do great!
Make sure you drink a lot of fluids ~3 liters/day

libbylu said...


Wishing you total dominance as your SCT journey begins.

What did the kids think of your hair?


cirezevlag said...

best of luck to you phil!

eric galvez

Executive Director, mAss Kickers Foundation

feresaknit said...

Wow, that's really different from what I got in November. Here you only get the Hickman line when you go in to have the stem cells stuffed back in. The cyclophosphamide (as we affectionately refer to Cytoxan) is administered intravenously through a cannula, mine in the back of my hand which enabled me to knit.

I felt more than fine until about 2in the morning and then was really rough the next day but had perked up considerably by lunch time the day after that.

The harvesting is also done if possible from the veins in the arms and if not a temporary line is inserted in the femoral vein.

I was told that my hair would fall out or thin considerably but it only thinned a little bit. Mmm, blue! Hey, even when you're feeling better you may still be looking blue.

The very warmest wishes.


Nerissa Picadizo said...

Dear Phil,

I’m keeping you in my prayers and I’m sending energy to this Great Universe of ours that your SCT will be easy sailing.

Glad to know you won’t get poke that much… thanks to Catheter!! Lisa Ray calls it ‘porta-cath’ :) ;)


Keep dominating!!!

All the VERY best for you and your family,

KT said...

Too bad you don't wear a jog bra, its great to just tuck the catheters and ports and stuff in there. Or that worked for me! haha

Roobeedoo said...

All the best from us! You could support the Scottish football team with hair like that! And Cassie - make him budge up - you need your naps too!

Lorna said...

I feel tired just reading about it all. As my health visitor used to say, if you get the chance, nap, nap, nap Cassie (I know not easy as usually if one kid is quiet the other isn't!) Thinking of you both. x x

Becky said...

That hair is really something special.

I thought of you guys all week long. I hope you're feeling fine this Friday evening.