Wednesday, March 30, 2011
I was watching Jaws with Lou, and I suddenly felt that pressure at the back of my throat to barf. You're thinking it might have been the bloody shark attacks in the movie, right? I admit that when I saw that movie as a kid, it ruined the beach for me.
Anyway, I took Zofran immediately. That improved things a lot, but I was certainly feeling iffy for quite awhile. Even when I went to bed, I was still slightly nauseated, and I was just lying there thinking that if only I could fall asleep, the nausea would disappear.
And it did! Woke up this morning feeling much better. Knock on wood, though. I hope I stay good.
Tuesday, March 29, 2011
What do I mean by completely useless? It's the kind of exhaustion where I cannot sleep, cannot read, cannot even watch TV... and I am not much of a conversationalist either on days like that.
The big event of the day was to go to lunch at Genki sushi (for cooked sushi) with Robert driving. Oh, and I weeded a flower bed for about 15 minutes around 5:30PM.
So, now it is Tuesday morning. I feel better today. That exhaustion seems to have lifted.
I just listened to 5 voicemail messages on my cell, from Sunday and Monday.
Sunday, March 27, 2011
Sorry if I didn't pick up when you called.
I was up at 6:00AM, and we went out to breakfast at 8:30 with Mo and Gail to Brig's. That was a lot of fun! I got a big bag of awesome presents from Mo and Gail, including a totally perfect covered tea cup with an interior loose tea strainer thingie built in. I had almost bought myself one just like it from a gift shop in Beaufort last weekend!
After breakfast, I slept for a few hours, and then Lou and I watched Star Trek Voyager.
My parents called and sang Happy Birthday into voicemail, and I listened a couple of times before calling them to let them know that I was okay.
I spent hours on landsend.com figuring out how to spend my birthday gift from Lou!
Lou and I watched Antitrust, which is a sort of comical high tech movie from 2001 with an evil software mogul who kills software engineers to steal their code. It was vastly entertaining, but I can't say I agree that all human knowledge belongs to the people. I am all for patents.
And now the day is almost done. I have been falling asleep at 8:00PM every night, but tonight I am a bit wired. (Hence the 3 posts I just wrote.)
There has been NO NAUSEA today! Quite an awesome birthday present, that.
I have been tired and useless though.
All in all, this was a great birthday. 46! Yahoo!
I was WIDE AWAKE again at 4:00AM on Saturday. I had a lot of energy and was surfing the web with the hope that the next day (Sunday) I would get a gift card for my birthday from Lou, and I wanted to be ready to buy something. I know, I am hopeless.
I showered early again and got to Starbucks at about 6:30. I tried a tall decaf mocha with only one pump of chocolate, with whipped cream, yum. The same lady took my order every morning, so we were old pals by now.
I had my third dose of chemo at 10:30, on schedule, because my nurse Lindsay was on a mission to get me home on time. For this dose, they gave me Compazine via the IV before the chemo, and I think that made a world of difference. I did not get nauseated, which was a miracle. (I did get nauseated on Friday afternoon, after my second dose, which was sort of upsetting, but they gave me Compazine and it worked.) I was really really sleepy.
Lou and Brent arrived at about 11:00. I was really drowsy and spent a lot of the time lying in bed listening to them talk with my eyes closed.
But at 5:00 approached, I woke up. Lou basically packed up the room for me, I got dressed, and we were discharged at an amazing 5:00PM! Doane picked us up at 5:30. On the way home, she swung by our favorite Chinese restaurant on the way home for takeout dinner.
Lou and I had a nice evening at home.
I woke up a million times that night, and probably woke Lou up every time. But it was so great to be home early. Too bad we can't count on that schedule every time.
The nurse wrapped my port and IV connector in Saran Wrap and let me take a shower, so I was shiny and sweet smelling when I showed up at Starbucks when it opened at 6:00AM. I got a decaf latte, because with the Decadron I definitely need no caffeine.
I don't really remember what else I did that morning! I think that I went to sleep from about 8:00 to 10:30, and then Julie came to visit me from 11:00 to about 12:30. We had a great visit, and I remember laughing a lot but no idea at what. I remember talking about Harries Teeter (our grocery store).
I think that I read a million email messages from the leimyosarcoma listserv that I finally got on. I am just lurking for now; not ready to introduce myself or post. The first message I read a couple weeks ago, some guy was saying that the only way to deal with leiomyosarcoma was surgery, and that upset me, so I didn't do anything but let the email messages pile up for awhile till I got over that. I'd like surgery, but once it is in multiple systems, no one wants to do surgery.
Anyway, the email messages I read on Friday were full of people getting chemo and useful and heartwarming. But I am still lurking.
Alice, Jose, and Dan came to visit from 5:00 to 5:45 and AGAIN I laughed a lot. Alice brought me a cute balloon with a doggy face and Thinking Of You on it.
I have no idea what I did after they left. I know that I was fast alseep by 8:00PM.
I know at some point on Friday I arranged with Doane to come pick us up at the hospital on Saturday at 5:30PM, becaused we were sure I would be getting out that early. I was so happy that I would be able to go home on Saturday, instead of having to wait till Sunday morning.
I think I am lucky that Anya caught a cold and could not visit me because having two sets of visitors on Friday was exhausting enough. Three sets of visitors (no matter how charming) would have been too much.
Friday, March 25, 2011
Mo picked us up in his new Jeep Liberty, and that brought back lots of great memories of our red Jeep Liberty, which we got the first year it came out. (2004?) I loved that reassuring feeling that no matter what happened, I could drive over it!
Mo dropped us off early, we hit the Starbucks, walked over to the clinic, and got squeezed in super early. My labs looked great, so we were approved to go ahead with chemo. I was actually in a hospital room by noon! Amazing.
This time, I skipped the Admitting Office and came right up to the ward. I was admitted by Barbara, an admittance nurse here on the floor. We had a nice chat. Oh, and I handed over two more boxes of Girl Scout cookies for the nurses. Girl Scout cookies are always welcome.
We had picked up lunch for Lou in the cafeteria on our way to the room, and so we ate together once my tray arrived. Then things really slowed down to a crawl. Lou and I were just waiting around. So we watched some Star Trek Voyager Season 3 episodes on Netflix discs.
The bag of chemo did not arrive till after 4PM (the pharamacist mixed it up fresh just for me). Then we finally started the first bag of saline, which takes two hours. My nurse warned me that although it looked like I might be getting chemo at 6:30, that would be dangerously close to shift change, so I would probably not get it till about 8:00PM. There is just too much going on during shift change for them to watch the chemo. I could see her point. I don't want some problem to occur when everyone is busy doing something else. Darn! The joy of getting in the room at noon was not panning out.
Right around this point, Darlene dropped by and we had an awesome visit. Then she and Lou left. She drove him home.
Then a miracle occurred. Barbara the admittance nurse offered to shepherd me through the end of my chemo while everyone else was doing shift change! Yahoo! This is huge, actually, because it means that I will be discharged on Saturday at 5:30PM instead of 8:00PM or 10:00PM. I can't wait to tell Lou. Maybe we can get a ride home on Saturday instead of staying at the hotel across the street.
Do you think maybe the Girl Scout cookies helped fuel this miracle? I do. The magical properties of Thin Mints are well known.
Even though not much has happened yet, I have been mildly nauseated all day. When they access my port, even with candy in my mouth, I just get nauseated. I am such a delicate flower. But the good news is, now I got an Emend pill, followed by Decadron and Zophran via my IV. No more nausea!
Chemo started at 6:40PM, and it went smoothly. I felt fine.
I was really tired, though, and I settled down to sleep at 8:00PM. I slept pretty well despite being woken up for various checks during the night.
At 4:00AM I was wide awake. There was really no point in trying to to keep sleeping. But now I am talking about Day Two, so I had better stop. I will tell you that Julie, Alice, and Dan are dropping by to keep me company, which will be great. Anya had to bail because she is home sick with a cold. (If you believe in it, please send Anya good vibes to get well.) We decided that if she dragged herself in here, she might give me her cold or actually kill some of my desperately-ill neighbors! I am hoping that Anya is just bumped to the visitors list for the next Chemo Weekend.
Wednesday, March 23, 2011
Tomorrow, Chemo Weekend Three starts with a visit to Dr R. Our friend Mo is driving us to Duke. Lou will hang out with me all day, but then he will come home with our friend Darlene. Lou will stay home till about Saturday lunchtime, when he will return to Duke. Saturday evenings seem to be tough for me. The nausea starts, so I get more Zophran, and then I am a bit zonked. We'll spend Saturday night at the hotel, and our friend Gail will drive us home Sunday morning.
This is our new plan, and I am all for it. No reason for Lou to babysit me the entire time. Plus, I have visits lined up for the entire day Friday! Anya, Julie, Alice and Dan... I had to turn away Doane and Sharon and promise them a visit on the next Chemo Weekend.
I have been avoiding thinking about this upcoming Chemo Weekend because I was like, "Ugh, drag-o-rama." I didn't want to dwell on it till I could get a good attitutude going, like, "Yeah, gonna kill me some cancer cells this weekend."
My attitude is much better now. This is the best option available to me right now, so I might as well embrace it. Plus, 36 hours of nausea ain't too bad, in the grand scheme of things. And once this weekend is over, then the next thing on the schedule is my next scan, where we take a peek and see what's what.
I am really looking forward to the scan.
Monday, March 21, 2011
There will be a scan in April. We'll find out what's happening then.
Other than that, I feel awesome. We had so much fun at the beach this weekend. Walked on the beach, picked up shells, got my feet wet, visited Fort Macon, visited Beaufort, ate great seafood...
I am bringing fudge to work this morning. Got to get moving on or else I'll be late for my 10:00AM meeting, which would be pathetic.
Thursday, March 17, 2011
It arrived yesterday, and made me very happy. It's a huge box full of peeps! Blue peeps! Orange peeps! Classic yellow peeps! Fabulous pink peeps. Proud purple peeps! Environmentally-sound green peeps!
Lou and I are knee deep in peeps.
There are so many peeps, I could start a peeps farm. Hmmm, what kind of response would I get from the Homeowners Association if I asked permission to buy a peeps coop so that the peeps could run free across the golf course?
Kathy is a birder. A birdwatcher. A member of the National Audubon Society. So peeps must be like the officially recognized birds of Easter.
Shhhhhhh, oooh, the box also contained Lindt chocolate baby chicks, but I'm keeping quiet about those because I do not want to share.
I am feeling great!
Tuesday, March 15, 2011
I had a great day, though. I was full of energy and got a lot done at work. Around 3:30, I did experience low energy, but I had a cuppa and it passed. Ah, but doesn't everyone experience low energy at 3:30? Usually I have a cup of tea and a yogurt and keep working and think nothing of it. No intense internal scrutiny required. One of my neighbors up the street told me that her oncologist once told her that she was entitled to have normal illnesses while she was on chemo, and that every headache or twinge was not cancer related.
My scalp is so much better, I probably don't need to call the doctor now.
Sunday, March 13, 2011
Every time I lose my hair, my scalp goes nuts with an awful follicular rash. It's like the worst, most disgusting acne you can imagine -- on your head -- and painful!
A few days ago, it started with a couple of red bumps. I have some over-the-counter liquid hydrocortisone, and it helped once before to control the rash, so I have been dabbing my head multiple times per day. But I am losing the battle.The rash is now all over my head, and it is messy because some of the bumps burst. (I told you this would be gross.)
Anyway, this means that tomorrow I have to call the doctor to ask for antibiotics. The antibiotics will clear it up in a jiffy. I have been a good sport; I have tried hydrocortisone; but I am throwing in the towel.
Other than that, I feel great. I didn't have to take a nap at all on Saturday. Lou and I watched an entire Star Trek Voyager disc, we went to Sushi Nine in Raleigh for lunch, and we went to Lowes to look at utility sinks and buy a bag of stuff to dump on the lawn to prevent crabgrass.
Got to go. There are barn swallows on the front porch, trying to set up housekeeping. We sprayed the walls with Pam and it is working, but the birdies are upset and milling around, pooping. I keep going out there and shooing them away.
Friday, March 11, 2011
I totally rely on this blog now. It is such a relief to NOT have to keep repeating the same update over and over. It is awesome when pals from work welcome me back to the office warmly and yet do not try to hug me because they know exactly where I have been and what I have been doing.
The blog also makes it so that my every interaction with every person is not an Official Breaking News Karen Health Update. (I know I can't go back on cancer vacation for awhile, but it is nice to not have to talk about it all the time.)
You cannot know how much I appreciate your voicemail, email, blog comments, and greeting cards. The kitchen table has a little forrest of cards, standing guard over us during meals, and offering cheery little messages of hope and support. (My old vanpool especially sends the best cards!) Every time someone reaches out to me, my initial reaction is surprise, and then I feel honored and cared for and more determined that ever to keep fighting and win the battle.
I admit that I am not good about returning calls or answering email, especially when the calls come in during or just after chemo. That is my most difficult time. During that time, I appreciate when people reach out to me, but I almost always also immediately forget the contact. That's the Zophran effect. That anti-nausea drug puts me to sleep and really messes with my memory. If I am going to be semi-alert for only 90 minutes at a time, then, realistically, returning calls is way down on my list of priorities.
(I get Zophran every day while I am in the hospital. If you visit me, and ask me later about your visit, you might be surprised at how little I remember, even though I seemed completely fine and lucid during your visit.)
So if I have ignored your voicemail, email, comment, or card, then I apologize because it is absolutely true that I have been rude to you. But I just cannot do the right thing right now. I cannot take care of you right now. It's too much work to take care of myself right now. So I expect to continue being rude in this manner until chemo is over in June. Please hang in there with me.
Who can visit me on Friday March 25 at Duke? If you can come visit, please let me know. (Cindy and Jeff, this does not mean that you should get airline reservations!)
For this next dose, Lou will not be staying at Duke the entire time with me. I just do not need him there babysitting me, when he could be working and taking Samantha for walks...
So I am going to be on my own from Thursday night to like Saturday lunch. If possible, I want to fill that time with a couple of visitors. So far, in that time frame, I have felt PERFECTLY FINE except for being tied to an IV pole. I should be good company. Even if I do not remember much of it later.
Thursday, March 10, 2011
Yesterday I took a short nap after lunch, but otherwise I got through the entire day awake and alert and nausea free. It was great. I worked a half day from home: 2 hours in the morning and 2 hours in the afternoon. So today I am upping the ante by actually heading into the office.
Earring news: Do you know about the really cool dangly earrings I bought in the Sea-Tac airport, but lost one earring on Christmas Eve? Well. I found the lost earring this morning! It was tangled up in the necklace I was wearing that night. Luckily I never threw away the one that I had. So today I am wearing cool dangly earrings -- to distract from my bald head.
Wednesday, March 9, 2011
Not how it happened. I have been shedding lightly for a couple of days, and then suddently this week, large patches of my scalp started to hurt. And in the shower yesterday, I would say that 75% of my hair just washed right off my head. Yikes. That was a shocker.
When I finally got out of the shower and fluffed up what was left, there was nothing worth keeping. So my big excursion yesterday was to go out and get my head shaved.
Lou came with. He got himself a French-press cup of Italian roast coffee from Electric Beanz while I was in the chair. The lady who took care of me was very sweet, would not accept a tip, and told me about several relatives who died from cancer.
Lou and I did a quick run through the grocery store for some essentials. When we got home, I basically went to bed and slept on and off for the rest of the day.
I have been sleeping pretty much all day, every day, Sunday through yesterday. Boring! Yesterday I tried to stay awake, but mostly I was just a zombie. Can't read, can't watch TV, can't iron. Plus, when you sleep all day, it is hard to sleep all night. I wake up from vivid dreams every two or three hours. By 4:00AM, I am happy to give up trying to sleep.
Every morning, at about this time, I feel pretty good. I am alert and awake. I am hoping that today I stay alert and awake! But it seems as though I crash right after breakfast. Today might be different. No more Decadron.
Monday, March 7, 2011
After Robert delivered us safely home, I pretty much went straight to bed. The doorbell woke me up later. Lou had arranged for John next door to pick up soup from the Chinese restaurant for lunch, because I had said that I wanted egg drop wonton for lunch. It was totally awesome.
I was up for awhile, watching a Denzel Washington movie about a runaway train. I know I said earlier that we watched Star Trek movies -- this one had Chris Pine in it, who is the new Captain Kirk... does that count?
Actually the Star Trek movies came next. Lou watched most of Generations by himself, because I went back to bed. But I got up in time to see my favorite part, where the two Enterprise captains work together. Then we watched First Contact, and I managed to stay up for the entire movie.
Carl and Pat delivered dinner, which was this amazing thing they call speedies. It was raining so hard all day, I kept thinking dinner would be rained out. But Carl got here through the rain.
We didn't stay up very late. Despite sleeping for most of the day, I fell right to sleep. I woke up on schedule probably every two hours. There was a point after midnight where I could have taken more anti-nausea drugs, but I did not. I was feeling fine each time I woke up. I am hoping that the first day is the worst, and that for the next two days the once-a day Decadron alone can keep me free from nausea.
But now it is wicked early, and I am up.
Lou and Samantha are asleep.
Sunday, March 6, 2011
Maybe that's too much information for you.
Anyway I woke up at 5:30 feeling pretty good, without nauseau that is. I took a compazine at 6:00 to help keep it that way.
Now the compazine is every six hours, so noon, 6:00PM, midnight, so easy to remember.
Pretty soon it will be time to get up. Robert is picking us up at 9:00AM to bring us home, yahoo.
I hear that for next cycle, Mo and Gail will tag team us on the delivery and pickup. Awesome.
My hands are not feeling twitchy any more which is great considering that it is no mean feat to blog off a cell phone in the dark.
Thanks for checking on me and helping me stay cheered on.
This chemo is tougher but the amazing thing is that this time I do not have to just hope it will work because that pain is gone so I know it has already worked.
Sent from my Verizon Wireless mobile phone
Saturday, March 5, 2011
I am in the hotel with Lou. I am not in the best shape. The third day is tough. I become nauseated soon aft getting the third dose. For awhile. I refused to saw it was nausea. Maybe that was counterproductive.
Sent from my Verizon Wireless mobile phone
Visitors Log book:
Mo and Gail, then they went to out dinner with Lou
Looks like Carol Piper is dropping by this morning.
looks like Amelia Vogler is bringing Thai food for lunch.
Looks like Lou is coming after lunch to hang out.
Definitely the third dose of chemo starts at 1:00PM.
No idea if anyone else will drop by.
I need nothing!
I went to sleep early, but then woke up WIDE AWAKE. The nurse offered me Ambien, which I am about to take as soon as I finish this sentence and click the Publish Post button.
Friday, March 4, 2011
I work with the best people on the planet! Here I am holding my excellent new plant.
Pink pajamas and a pink bathrobe! What else did you expect? And although I look a bit rumpled after lying around all day, I swear that I ironed everything before it went into the suitcase.
I asked my nurse what Special Heme meant, and she said it means that when they take my blood, they can use my port. Interesting. That sign was not on the door during cycle 1 three weeks ago.
Hmmm, I can see where these chemo-hospital-stays might start to be like cruises --- in that after a few cruises, we found ourselves always talking about how some particular aspect (breakfast, entertainment, balcony chairs, whatever) of this cruise was better or worse than that other cruise... It got to be a drag and maybe a little boorish so we made ourselves stop doing it.
What's the point of all this? Later on, when Lou and I came back from a walk, I saw that someone had handwritten in the word Very on the sign. Very Special Heme. Awesome!
Every time I see it, I smile. I am Very Special, probably because of the yummy Girl Scout cookies that I presented to the nurses when I first arrived. Peanut Butter Patties and those fancy Thanks-A-Lots that are chocolate-dipped shortbread with "Thank You" in a few different languages.
I was so glad to see Lou! Once the doctor set me free, we took a stroll to Starbucks. Now we are watching a Star Trek Voyager episode on Nick's old laptop. There is nothing I would rather be doing! (Well, unless there was a genie granting me three wishes.)
Hey, if you had three wishes, would you give one of them to me?! I would wish for a complete and miraculous recovery, all tumors gone.
Sent from my Verizon Wireless mobile phone
I got the ifosfamide from 9 to 10 PM, followed by a protective drug called Mezna at midnight and again at 3AM. The last Mezna just beeped to indicate that it was complete. It woke me up. I have been asleep pretty good since 10PM.
I was sleepy and sort of nauseated all day. I think it was because of the trouble with my port. Now I love this port and think everyone should have one. This problem has only happened twice in the 4 years I've had this puppy installed.
A sort of blood clot called a sheath formed so there was no way to get blood out of me. The solution is to fill the port with TPA and let it sit for an hour and then draw it back out and voila the blockkage is cleared.
The difficulty for me was that the first nuse flushed the port like six times trying to to clear it. When the port is flushed I get a taste in my mouth like bathroom cleaner. It's usually no big deal but if I am getting chemo, then that yucky taste triggers nausea. Having a candy in my mouth totally helps, not for that many flushes. It was a losing battle.
So I spent the day tired and slightly nauseated while waiting for chemo. Too wiped out to talk on the phone or blog much.
I feel much better now. The nausea is completely gone. I am still tired but it is a normal 4:00AM desire to go back to sleep. (Which is what I'm gonna do right now.)
Sent from my Verizon Wireless mobile phone
Thursday, March 3, 2011
Robert picked us up at 9:00 and entertained us all the way to the hotel. Robert is one of those guys who has a million stories, and they are all interesting.
We checked in at the hotel and then headed directly to Starbucks for a caffeine jolt. Once I start taking the decadron I.ll have to avoid caffeine but not yet.
We used the covered walkway to get to the clinic. And now we're sitting in the waiting room for them to take my blood.
Rachael Ray is on the TV but we are both reading.
Lou's reading a dinosaur book that he keeps raving about.
I'm reading The Radley's, which is about a vampire family in a village in England. It is awesome! The parents are abstaining from blood, and their 2 teenagers don't even know yet that they are vampires.
Sent from my Verizon Wireless mobile phone
Tuesday, March 1, 2011
That just came in via email from Lou, who reigns supreme and unchallenged as The Best Husband in the world.
My chemo nurse said that I should avoid raw sushi, but there is plenty of fully cooked fabulous sushi items to choose from. So, Mom, no need to worry.
I had a bounce in my step all day. I walked to Building T for lunch, which was awesome. (The walk was awesome, the lunch was just fine.) What a great day. At one point, I was thinking, "It's a shame I have to get chemo on Thursday and ruin this." Ha!
But I think the chemo is working. I am hardly taking any Advil at all. That is a HUGE improvement over taking three Advil every six hours. I hope to feel even better after the next dose.
Let's do it! Thursday can't get here fast enough.
I'm bringing Star Trek Voyager discs from NetFlix to the hospital. We just started watching the series over again from the beginning. We're still in Season 1. It's so familiar and yet unfamiliar because we saw these episodes like a million years ago.