Sunday, April 5, 2009

Only 1 mo A/C - then the 4 Taxol....

I had my 3rd A/C treatment on Friday - one more to go. All my bloodwork shows I'm doing very well, Dr. Amy was very pleased. She wasn't happy that I'd had such horrible nights again last time, so she added Ativan (aka Lorazapam) to the drug regimen. So far so good on that, when I start feeling super crappy I pop one of these tiny pills and I SLEEP. 2-3 hour nap sound asleep by day. Last night was the dreaded Saturday night post A/C - the previous 2 Saturday pm's have been sheer HELL. I took the Ativan with the Compazine at 11pm, and slept until 4:30am - period. Took the combo again - slept until 7:45am. WOW. Woke with a headache, so capped it off with pain pill, then Zofran - and I'm off and running. I'll lay off the Ativan until/if I start feeling really bad again this afternoon, then I'll take it and nap again. Stephen keeps putting food in my hands every few hours - that I can't imagine eating prior, but I do and that helps as well. Eating small meals several times a day - forcing down water, adding Crystal light or instant tea mix to the water bottle in between up the liquid intake. And a Milkshake once a day caps it off. WAY better than first go round when I starved myself and got dehydrated, even better than last time when I forced myself - turns out I need Stephen to keep track and actually put food in my hands. He just walked in and put a breakfast bagel sandwich in my hands - and I eat. NO WAY would I have eaten on my own this A.M. I said YES to the HS Band Sunshine committee to bringing meals a couple days after every chemo - will be a huge help to us all, especially my husband who takes on ALL the responsibiltiy 'round here when I am chemo-y. He's discovered he is down with doing dishes, he told the family therapist yesterday he think's he'll keep up being the go-to dish guy. That's pretty thrilling. He'll leave the laundry to me - as I am laundry anal-retentive. Kellen piped up and said HE'D do laundry with me - we'll see about follow-thru on that. Right now he is makeup makeup makeup schoolwork- as he's been very, very sick. He's lost so much weight, it's very worrysome. I get sick - he get's sick. We are really hoping he'll make it thru this time without joining in my sicky-ness. So far - well, let's just knock on wood and not say it outloud.

I want to recoup quickly, Thursday is Kellen's 16th birthday (and his grandpa's as well) He has good Friday off from school, we have the Moore family Easter/birthday celebration Saturday - and supposedly MY family wants to get together Easter Sunday. That would be a first in a YEAR, so here's to hoping. I hear my brother is a bit freaked by my baldness. If you are out there big bro - NOBODY see's my baldness but Stephen, I'm getting very good with the scarves, hats and I've even worn my wig one night. It looks like - hair, not bad. But DAMN it's uncomfortable! Hot, itchy and very tight! Tight is good, tho - wig flying off would be very bad. I wear dangly earrings almost always when I go out. THANK YOU Debbie for the new danglies! I wasn't a big dangly wearer, because my long thick hair hid them. Now I find I put on a bit of makeup more, with the earrings - to take away from the manly looks of the no-hair, doncha know. And now that we're getting into much more sun happening, I'm going to have to get used to wearing some hats - I'm sun sensitive from the chemo. I ordered a couple, one is a brim that fits over the scarves - pretty cool actually.

My obsession last week was wanting to book a vacation between my chemo and radiation this summer. I started with Dr. Amy - Oncologist. My final chemo is scheduled for 6/12. I emailed her - I figure I need 1 week to recoup b/4 I travel - so If I wait 3 weeks to travel, that gives me 2 weeks leeway for delays in treatment (delays due to bad bloodwork is common). Her answer was - you WILL BE NEUTROPENIC, so I don't want you to travel with less than 2 weeks wait. That means my white blood cells will be low, I'll be immuno-suppressed, etc. I'll also prolly be anemic to a degree. I knew all that, but it SUCKS to hear it from her. So anyhoo, she said two weeks to recoup, two weeks leeway - wait 4 weeks and I'll sign off on it. Here's the issue there - Radiation Onc said she wanted to start radiation 21-28 days after chemo - if I wait 4 weeks, then travel one week - that's 5 weeks - Is that OK with Rad Onc?? She's on spring break - don't get an answer until next week. We NEED A BREAK, and we need something to look foward to. And I want to see the ocean really, really bad. I like the idea of supporting the Texas Coastal communities that were so devasted by the hurricane, and have gotten so little government support. They are starting to open up for bookings - so now is the time to get one we like nailed down! The hospital in Galveston just re-opened as well, in case I were to have a small problem - and MD Anderson isn't far, if I were to have a BIG problem.

My leg hair is mostly gone, no arm pit hair which is awesome, very bald on top but I still have eyebrows & eyelashes, but they've thinned a little bit. No upper arm hair, but still have lower, but thinner. Not much down there, which is fine - basically, all the hair from my nose down could leave forever and I'd be fine with that - if I could keep or get back my eyes and head. The A/C is hell on the mouth - raw gums, cracked tongue. Last time I got sores at the corners of my mouth that felt like paper cuts. I got new special toothpaste and mouth wash that helped, right this minute the sores part in and out of mouth are better, but I know that they come back about 4-5 days after chemo. Taste is YUCK for at least 5 days, then just weird until the next one. The sandwich I just ate tasted like cardboard and other packing materials. Water tastes very metallic. Salt & pepper on everything - once I get over the queasy, like a week out Mexican is very good. I've been eating rolaids like crazy. Constipation is a very bad thing - from annoying to painful. I NEVER have this problem in real life, so I think I'm an even bigger baby because of it - but it sucks! I've just started sticking with the old fashioned Milk O Magnesia, all the fancier, expensive pills don't seem to do anything. I must say I'm ever so much more grateful that we are the "regular" family, all of us like clockwork - except for me now in my chemo-y state.

I just don't know how I'm going to be able to thank everyone for everything they are doing for us. I continue to find treats on my front porch - now that it's spring I've some lovely little potted flowers, lucky shamrocks, lucky bamboo. Earrings, snacks, cards that CRACK me up, I got a gift certificate from a client wanting to "pick me up with retail therapy". Food gift cards as well - all so overwhelmingly nice. And the dangly earrings - so awesome! How can we stay "down" when we are constantly getting treats and hilarious cards? But really it is the thoughts and the love behind it all, it's just too awesome.

My most smart things have been getting the Kindle for reading - LOVE THE KINDLE - and the sewing, my blankie is coming along so nicely. And thank GOD for the DVR. I'm diligent about checking the schedule and recording anything that might remotely interest us, for these post-chemo days having something to watch is manditory - and I can crochet while I watch, making me feel a little less completely worthless. It's all about fighting the tedium! Overcoming the blaaaaahs, distracting from the feeling horribleness. I succeed more than I fail, I think. When I feel the worst sometimes I cry, but not too much. Last night I stood up and just cried, Stephen ran over to hug me. I yelled "Don't get my tears on you! They're toxic!" No idea if that's true, but it sure felt like it.

1 comment:

  1. Kelly, found your blog through the convoluted connections from other blogs. Please take care of you - you're coming down the home stretch.

    I'm loving my DVR too :) I watch Armageddon over and over again when I'm feeling annoyed at this whole BC thing. It works for me!

    Take care,