Cheer Me On!

Memphis!

2012-01-28T09:56:00.000-05:00

Today we see Memphis at the DPAC! I see on the web that it is loosely based on the true story of the first white DJ to play black music on the radio, in the 1950s. I am pretty excited.

The pain in my back is greatly reduced, so I think that bringing back one Celebrex per day is doing the trick. Since I couldn't get 100% off the Celebrex, I am moving on to the next drug on the list, neurontin, and starting to reduce it as directed by my doctor.

I am really leaning toward option 3, because that is the one Dr R is excited about. But I have to finish reading the paperwork and talk to Lou.

Had a Good Cry Last Night

2012-01-27T09:27:00.000-05:00

Thursday night is poker night, and Lou was next door at Nick's with all the guys. So Bailey and I had the house to ourselves. That hardly ever happens!

I had a good cry, which Bailey didn't really like. She sat next to me, and then ran off, and then came back again... But the thing is, I must have needed it, because I woke up this morning feeling a lot better, emotionally.

My back, however, is bothering me again. So if you see me walking around hunched over, that's why.

We are going to choose an option this weekend. There is too much happening today for a decision.

Ha, I was going to write "an informed decision" but the part that gets me is, these decisions aren't all that informed. Not a lot of info available, at least not the kind of info that I want.

Bad News Piled Up Yesterday

2012-01-26T21:51:00.000-05:00

The initial bad news yesterday was a shocker. We'd been expecting good news. I feel great, and we'd never gotten bad news so soon after starting a chemo. So we weren't prepared. I had thought about trying to convince Lou to stay home. I hated the idea that he was wasting his time, coming to this routine appointment with me.

Once I realized it was bad news, we started talking pretty seriously about what my options were. That was complicated, trying to decide what to do next. Didn't leave a lot of room in my head to feel sorry for myself.

More bad news came later, though. After we got home, we talked to a nurse on the phone, who was reading things off the CT Scan report that we had not talked about with Dr R. Like, the tumor in the pancreas is now much larger and outside the pancreas and "infiltrating the liver." That can't be good. And there is a new mass, down near my bladder that is about an inch.

I was upset last night and had to set it all aside after surfing the web for awhile. But I did get to talk to Dr R today. He thinks that the tumor is not infiltrating the liver. To him, it seems to be pushing up against the liver. In general, sarcomas don't infiltrate organs. And if a tumor does infiltrate, it typically does so with finger-like growths. And my tumor shows no finger-like growths.

Plus, he said it wouldn't be so awful if it were infiltrating, because the liver is pretty big. But that sounds like not worrying too much if there are mice in your kitchen, since your house is pretty big.

Here are the three options:

Clinical trial of Dacarbazine vs Eribulin
Clinical trial of Dacarbazine vs Yondelis in South Carolina
Phase I clinical trial of two other drugs together

There is some strategy in choosing the next treatment. If I choose option 1, then I can never do option 2. I can get Dacarbazine at any time (it's an older chemo drug well established for LMS) but then I can never do options 1 or 2.

We were leaning toward option 3, but there are some yucky requirements for the clinical trial, like multiple skin biopsies and tumor biopsies. Option 3 does not sound fun. But Dr R thinks that it is an exciting combination of drugs. I cannot remember the names of the two drugs. I have a whole big handout on option 3 but I don't feel like going to get it.

So right now I don't know what to do. this is the most difficult time, trying to decide. Once I decide, then it is much easier. I have a goal, something to focus on.

The thing is, there is no guidance on which one will be more effective for me, and which one will be easier for me to endure. So it is a crap shoot.

Bad News

2012-01-25T12:18:00.001-05:00

So the lovely easy pleasant pazopanib chemo is not working.

All tumors grew. Bummer. The one in pancreas grew by 20%.

Three options... More details to follow.

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Done

2012-01-24T15:28:00.001-05:00

What an amazing appointment. Everything was fast fast fast.

I cannot believe that I am done.

Gonna head back to the office... And I'll try not to think about this again for the next 18 hours.

Results at 9:30 am.

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I am at Duke

2012-01-24T13:40:00.001-05:00

Just got here for my scan. I am hanging out in the waiting room, waiting for them to draw blood.

There was a huge lineup of cars on the way into the parking garage because someone was waiting for a car to pull out so they could take the spot.

We were waiting and waiting... I finally started watching the clock and another two minutes passed. People behind me started beeping.

It was sort of funny.

You have to assume it was a patient getting into that parked car, moving awfully slowly after getting some kinda treatment. No wonder it took forever.

I always zoom to the top of the parking garage because there are lots of empty spots up there. To me, its crazy to waste time trying to squeeze into a spot on a lower level.

I rode down in the elevator with two like-minded folk. I think the woman was one of the beepers. She claimed she was about to throw her car into "park" and walk up to see what the holdup was!

Okay, I'll admit it. I beeped my horn too. Two short cheerful toots.

Sent from my Verizon Wireless Phone

Happy in the New Year

2012-01-09T10:37:00.001-05:00

Hey y'all I am doing well!

I should have updated you sooner. I apologize for being lazy.

The combination of the new drugs and new PT activities has helped tremendously:

I sleep through the night, every night!
I am rarely in pain!
No more tears!
No more plans to chop off my left leg!

I haven't had to take any narcotic pain killers in like a week, which is super awesome. I am taking Lyrica, Neurontin, and Celebrex... with an occasional dose of extra strength Tylenol thrown in.

PT has been excellent, but the effects last three days. I have three sets of exercises I am supposed to do on my own at home. I am not all that compliant. One exercise, which Lou has to help with, I do like clockwork because Lou is involved. But the other two exercises, I am sort of spotty on. Probably if I did them as directed, things would improve. I MUST DO THEM!

OK, got to get back to work now.

Physical Therapy

2011-12-28T02:29:00.000-05:00

In my last post, I raved about Dr Schroder and the new drug regimen. I forgot to mention that on Thursday morning, I had a PT appointment with Jaime. We talked about how I had been going for four weeks with no improvement, and she said that she would try one more thing -- and if it did not work, I needed to go see a real back doctor and get some guidance on what to do.

That one last thing she tried worked. It worked great. I think that probably half of all the improvement that I attributed to the new drugs was actually Jaime's work. She did something to my hip flexors, and it's like the disc stopped bulging, because the pain just went away. (The hip flexors are comprised of my old friend the psoas muscle and the iliacus muscle, and they make it possible for you to flex your hips.)

The pain went away during the day, but came back at night. That's where the new drugs helped. They took away the pain so that I could finally sleep again.

Whatever Jaime did was temporary, though. (To be expected,) The pain started creeping back, little by little, starting on Saturday night. It got bad this morning, and I mean bad. So, that is six days after Jaime worked on me.

Luckily, I got a PT appointment today with someone else (because Jaime is on vacation). The PT today was great, but why am I awake at 2:00AM? I woke up with pain down near my ankle, on the outside of my leg. It feels like I sprained that ankle really bad, but I didn't. It's just nerve pain from the bulging disc. So whatever the PT did today, she didn't accomplish what Jaime did. Darn. I see Jaime first thing on Tuesday morning, six days from now.

In about twelve hours, I go for a massage with Martha at the physical therapy office. Two weeks ago, I had a massage with Martha, and all the pain went away -- but only for six hours. Those were blissful six hours! So I am hoping for at least that much relief this time.

Now what? I am sitting in my office, in pain, in the middle of the night. But I am not all freaked out, and I am not going to cry. I have had too much success lately. I am not without hope.

Both William and Jeff mentioned that they are awake at night a lot, and that I ought to ping them for company in these dark hours. Maybe I'll just update my facebook status and see what happens.

Christmas Miracle

2011-12-24T07:35:00.000-05:00

On Thursday morning, on my first day of Christmas vacation, I limped over to my primary care physician's office for a refill prescription of the narcotic painkiller that has not been working. Luckily, I got to talk to the nurse. I explained that I didn't really want any more of a drug that isn't working. Couldn't I have something different, not necessarily something stronger, in the hope that it might work?

I told her what I hadn't told anyone. In the wee hours for the last few nights, when I am in considerable pain, cannot watch TV, cannot read, cannot lie down, and still have 2 hours before I can take another dose of painkiller that isn't really going to help, that I sit alone in my office, sobbing, trying not to wake anyone up, but unable to stop crying.

She said, "You need to tell all that to the doctor," and she dragged me to an exam rrom. I waited for awhile until he could squeeze me in between official patients.

So my fantastic primary care doctor talked to me and devised a completely different strategy for dealing with the bulging disc pain.

I tried it Thursday night, and only woke up twice in the night! I was so chipper on Friday morning! Like a new person. It was especially wonderful because Lou's Christmas vacation started Friday, so we were all hanging out together (Patsy, Omer, Lou and me) and I was not a pain-wracked zombie woman.

We all went to the very cool "Rembrandt in America exhibition" at the NC Museum of Art. There are almost 50 Rembrandts on display. But they are not all Rembrandts, which is the point of the show. Lots of paintings were thought to be Rembrandts, but later shown to be by a student -- or by Rembrandt and a student together. (He would get a commission to do a portrait, and he would paint the face and a student would fill in the rest.) So the show is about collecting Rembrandts in America, and how authenticity has been challenged over the years. Imagine how bummed you would be if you bought a Rembrandt and found out it wasn't one?!

Last night, I think I woke up only twice again and got another awesome night's sleep. I woke up early in minor pain this morning, but that's NOTHING to complain about. I am so relieved to be sleeping again. It's a Christmas Miracle.

Happy Christmas Eve Day!

I hope Santa is very very good to Dr Schroder, because he deserves lots of toys.

I Need Some Sleep

2011-12-21T22:59:00.001-05:00

I haven't been sleeping more than 2 hours at a time. I wake up in pain, wander around the house for awhile till the pain drops to a manageable level, and then go back to bed for another 2 hours or so. Awful. I hate the thought of another night like that.

I talked to my doctor today trying to get a sleeping pill because all I want is a good night's sleep. But he wouldn't cooperate, and rightly so, because it's the pain waking me up. So instead he wants me to take more of that nerve pain blocker at night. I took it at 8:00PM, and two regular pain killers at 10:00PM, and now finally the pain shooting down my left leg is significantly reduced.

I must admit that I feel some empathy for poor Michael Jackson. It's terrible not to be able to sleep. I bet if I were famous and rich, I could have gotten some doctor to cooperate today. Oh well. See how that turned out.

Everyone else is sleeping. I'm in my office, watching Doc Martin episodes.

I guess pretty soon I'll try going to bed.

Other than all this back and leg pain, things are great. It's so nice to have Patsy and Omer here. We've been having fun hanging out, and we have tickets on Friday to se the Rembrandt exhibit at the art museum. My Dad has been fixing things, and my Mom has been making killer salads.

------------------------UPDATE----------------------

Argh, I cannot sleep. I lasted 15 minutes in bed.

Bedroom Difficulties

2011-12-19T11:13:00.000-05:00

So last night I was back on the horrible all-foam mattress in the master bedroom, and my parents were in the guest room on the super firm guest bed. (They offered to sleep on an air mattress on the floor. Yikes! No Way! But what a sweet offer.).

Patsy and I had been in the hot tub, so I was all relaxed and sleepy when I crawled into bed -- and immediately sank into a terrible position. The pain escalated quickly. I had to get up. I was walking around the bedroom, thinking, "Oh, my God, I cannot tell them this is not going to work. Maybe I should try sleeping on the floor."

But then inspiration struck. I got an extra pillow and put it under the parts that were sinking (my, um, lower back). It worked. No more sinking.

I was able to sleep, but not all that well. I woke up in pain every 2 hours, so I would walk around the house in the dark till the pain went away, and then get back into bed on the pillow.

Luckily Lou did not wake up every time I did. Neither did the monster, who has been known to bark when she hears me (a possible intruder) walking around the house in the dark (perhaps stealing the silverware).

But who cares! Patsy and Omer are here!

Christmas Surprise!

2011-12-18T19:44:00.000-05:00

Omer and Patsy are here!

Lou secretly flew them out to be with us for Christmas, and when I came home this afternoon after runing an errand, they were here waiting for me!

I WAS COMPLETELY BLOWN AWAY!

This is such an excellent Christmas surprise.

Last year, Lou secretly got me a new dishwasher installed for Christmas. This year, he flew in my parents. What the heck will he do next year? The mind boggles. Can't get better than this.

Oh, ho, all you people who were in on the secret. You are sneaky sneaky people! That includes John and Raglady and God knows who else.

No wonder Lou was so adamant that I stop sleeping in the guest room.

Like a Guest in My Own House

2011-12-16T13:15:00.000-05:00

This week has been a huge challenge, but I am a lot better now.

It's so funny that the chemo is going along just fine, not giving me any trouble at all -- but that the bulging disc just about killed me this week.

On Monday, I was at my wits end with all the pain from the bulging disc pressing on the nerve root. I wanted to chop off my left leg.

But the word came down from Duke for me to try more Neurontin (which is the nerve pain blocker drug). They increased my dose to 2 pills, 3 times per day. That dose turned me into a Drooling Zombie for two days. I could not drive, converse, read, watch TV, eat, or function at all. (Poor Lou, having to put up with that.)

Once I adjusted to the higher dose, and stopped drooling, I was fine -- and the PAIN WAS GONE!

It was an early Christmas Miracle, an answer to my prayers. Actually, to be honest, I have to clarify that the pain is mostly gone. Like, 90% gone. I am making a big effort to ensure that my back is always suported, that I do not pick up anything heavy, and that I use ice packs when the pain returns.

Oh, and I have been sleeping in the guest room all week. The mattress there is much firmer than the one in the master bedroom. As a result I have been sleeping a lot better... despite being lonely for Lou. Last night, after four blissful nights in the guest room, I tried an experiment: I went to bed in the master bedroom just to see if the mattress was really part of the problem. It was awful! My back and leg hurt so much, no matter what position I assumed, that I had to go back to the guest room.

Lou says my homework is to find a mattress that is bulging-disc-friendly. I guess I'll be surfing the web tonight... Anyone have suggestions?

It is a good thing we have no plans for house guests, though. I do not know how long it will take to get a new mattress that works.

Last night, my homework was to find steak knives online. We are having friends over for prime rib on Christmas day, and we have no steak knives. That was fun. Gosh, I love shopping.

Let's Hope THAT Never Happens Again!

2011-12-11T23:53:00.000-05:00

This morning, Lou and I had plans to go to breakfast with Pat and John from next door. We were headed to Brig's, where you are practically guaranteed an awesome breakfast. John was driving. I was in the back seat. We missed a turn and ended up zig-zagging through a neighborhood under construction. Zooming down one street, making sharp cormers... We could see where we needed to go, but we kept running into dead ends.

Suddenly I was overwhelmed with car sickness. I said something to that effect, and John pulled over immediately. Luckily we were in an area where no houses had been built yet. I popped out of the car and stood by the side of the road for a few minutes, fighting the nausea. Everyone got out of the car. I kept saying, "I think I'm okay," and then I power barfed onto the undeveloped lot. Luckily, all I had in my stomach was water. Someone handed me some paper towels.

Nothing like a public vomitation!

I felt much better right away, and we got back in the car, this time with me in the front passenger seat. Pat gave me some cinnamon gum, which tasted pretty good. We almost immediately found our way onto the main road and continued to breakfast without further incident.

Gosh, I hope nothing like that ever happens again!

For years, I have been prone to mild car sickness, but I have never even come close to barfing. I'm thinking that maybe being on this chemo might have made me more susceptible to the nausea. Who knows.

Anyway, the real news for this weekend is that my back and left leg are much worse. I have been fighting off pain all day and all night. (Until recently, I was in pain only at night.) I can't sit, and I can't lie down. I can stand -- but standing up is not giving me immediate relief from pain anymore. And it's hard to think straight, hard to focus. This afternoon, I could not read, and I could not watch TV. Darn. That drove me especially crazy because I have a new nonfiction book that I wanted to make some headway on this weekend: Blah Blah Blah: What To Do When Words Don't Work. Anyway, I can't go on like this. I am calling Dr R tomorrow morning because I need some help to make this pain go away. I am actually blogging right now because I could not stand another minute in bed, and I can take another dose of pain medication at midnight.

Again With the Early Wake-Up Call

2011-12-10T06:17:00.001-05:00

Like clockwork, the pain from the bulging disc woke me up at 5:00AM. But last night was different. I took a sleeping pill, in addition to the painkiller, at bedtime, in the hope that I would not wake up needing more painkillers at 3:00AM. That worked. I slept right through.

That's an interesting tradeoff. Which is worse, the middle of the night extra painkillers or the sleeping pill? And more importantly, will the extra nerontin eventually kick in and reduce my need for nighttime meds?

Enough about pain.

Today Lou and I are running an errand for George. We're picking up an item from a Craigslist seller and shipping it to George. Fun.

I really shouldn't blog first thing in the morning when I am in pain and grumppy! (A little time has passed, and a little tea has been consumed and a little grumpiness has faded.)

I can't lie down, I can't sit down. The pain lessens when I stand or walk around. So Lou comes in and asks very sweetly if I would consider ironing some of his long sleeved shirts that I am holding hostage in their wrinkly state. Perfect! I stand while I iron, so the pain will be lessened. And my heart is lifted when I iron. plus, I have been craving watching Home Alone. Nothing gets me in the Christmas spirit like that movie.

So, that is the plan right now. Lou will cook breakfast while I iron and watch a movie.

Repeat Performance

2011-12-09T05:43:00.000-05:00

I woke up again on Wednesday really early, with my left leg on fire, but with a mission. I snuck out again to the kitchen table and waited for Lou and Bailey. This time I had a squeaky toy. I started calling her name and squeaking her toy as they came out of the bedroom. This time, Bailey was fine.

That's one advantage of this pain. I can get up earlier than the dog.

On Thursday, I talked to Dr Reidel's nurse yesterday, and we came up with a plan that might help reduce this pain at night (and thereby reduce my reliance on painkillers). I am going to try taking more neurotin at dinnertime. I take the lowest dose of neurotin now. I am supposed to give this new approach a few days and then call back in.

If I have a bad night (little sleep) then the next day is not that great. I get swamped with exhaustion around 2:00PM. Exhaustion is, I think, the most common side effect of this chemo. Exhaustion isn't that bad. I sort of like exhaustion, compared to some other side effects. It's just hard to stay at work when it hits. I just need to go to sleep.

This morning was like every morning this week: the pain woke me up at 5:00.

TGIF

Attack Dog!

2011-12-06T08:00:00.002-05:00

I woke myself up this morning tossing and turning, looking for a position where my back didn't hurt.

At first I thought it was the middle of the night and that I would just take another painkiller and go back to sleep. But it was 5:30.

I decided to get up.

I snuck out to the kitchen, leaving Lou and Bailey asleep. I made myself a cuppa and settled at the kitchen table to play Words With Friends.

Soon, Lou and Bailey came out of the bedroom. Bailey saw me and went nuts. She barked and growled in a really scary way. Lou immediately grabbed her collar.

"Who is this person in the kitchen?! No one is ever in the kitchen when Daddy and I get up!"

I talked to her, hoping that she would recognize my voice. Lou talked to her too.

She kept growling.

Finally I walked away and sat in the sunroom, where I always go to pet her when I come home at night. Finally she recognized me. Then she was all wiggles and cuddles and apologies.

Burglars beware! This dog is scary!

(Right now I am at physical therapy)

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How Is It Going?

2011-12-04T22:56:00.000-05:00

Things are going great with the pazopanib! I have taken four doses. Compared to other chemos, this is a breeze. I'm talking about a sweet, honeysuckle-scented North Carolina summer breeze, too, with butterflies and chirping birds and happy adventures right around the corner.

There have been random moments when I felt really tired or just really bad, but they seem to last like 15 minutes. For example, at Costco on Saturday, I felt weak and bad, and I went into the ladies room and was shocked to seethat my face was drained of all color. But it passed.

My problems with my left hip and left leg (caused by those bulging discs) seem to be getting worse, though. Since Friday night, there's been a lot more pain, numbness, and unsteadiness -- both day and night.

Like, why am I blogging at 10:30PM? I tried to go to bed an hour ago but the pain flared up so ridiculously that I had to get up. I want to sleep, though. I know that getting a lot of sleep is crucial during chemo, if I want to be able to function at work.

Do you think it's possible that the exercises prescribed my my physical therapist are making things worse? They are just simple stretches, but... it seems that things have gotten worse since I started doing those stretches. So I stopped doing them. And I have a vague memory that the last time I tried PT, the same thing happened, which is why I stopped going last time. I will talk to Jaime on Tuesday when I have my next PT appointment.

I talked to my brother, Jeff, this aft, which was awesome. He's had bulging discs, too, and he has taken Nerontin, too. But he never stretched while the discs were flaring up because it seemed as though it might exacerbate the problem.

Here is something fascinating that I realized this afternoon: all this pain and trouble from the bulging discs is much easier for me to deal with -- emotionally -- than any pain at all from the tumors. I have absolutely no sense of dread or fear associated with this bulging disc pain. It's not like I'm cheerful as I writhe around trying to find a comfortable position. Maybe calm is a good word. If I could make up a word, it would be un-freaked-out.

Four Gray Pills

2011-12-02T11:12:00.000-05:00

The handouts say that I am supposed to take the 4 gray pazopanib pills either one hour before or two hours after any food or medication.

Lou and I stood in the kitchen Wednesday night trying to figure out when the best time would be. It was such an intense technical discussion, we could have used a spreadsheet to help us. If this pill works, I will be taking it indefinitely, so we needed to pick a time that wouldn't disrupt my life too much.

Originally I thought that I would take the pills two hours after dinner -- but my dinnertime varies wildly. Plus, I take some medications when I go to bed. Can I guarantee that there would be one hour between the pazopanib and bedtime?

I could take the pill first thing in the morning, but that means that breakfast would have to wait an hour. I usually eat breakfast about 30 minutes after I wake up, and then I zoom to work. Do I want to have to eat breakfast in my office every weekday? I dunno about that.

I did verify with the pharmacist that clear liquids are okay just before or just after I take the pazopanib. Since I uses skim milk in my tea, my usual mug of tea would be okay.

Anyway, Lou and I decided to go with 10:00AM every day. That's a little more than 2 hours after my typical breakfast-time, but at least an hour before lunch. And it has the added benefit of prohibiting morning snacking! Lou set up a reminder on my cell phone.

I took the first dose on Thursday, and the second dose today. So far, everything is fine.

Last note: yesterday morning I had excellent physical therapy, and this morning I had excellent acupuncture.

Starting Chemo Tonight

2011-11-30T16:52:00.000-05:00

Wonderful news: My MRI doesn't show anything that would require surgery, so I am free to go ahead and start paZOPanib tonight! Finally! Woo Hoo!

I need to take it with a lot of water either one hour before or two hours after a meal. I considered taking it before breakfast, or after dinner... Lou and I think that it might be easier to take 2 hours after dinner (which would prohibit evening snacking, hee hee).

More wonderful news: I am no longer barfing. Today I went to work and got a lot done.

Life is good.

The MRI shows multiple bulging discs, which isn't great. In the past, physical therapy helped with a bulging disc, so I am going to jump back into that. I have an appointment with Jaime at Avante tomorrow monring. Jaime is awesome.

Barfed

2011-11-29T12:26:00.001-05:00

I am home sick in bed. I have been sort of miserable ever since I woke up, and about 90 minutes ago I realized that I would eventually have to barf.

Lou settled me into bed with a bucket just in case. But I made it to the bathroom okay.

I just barfed and even got a minor nose bleed which has never happened before. Freaky.

Anyway, no news about the MRI yet.

Sent from my Verizon Wireless Phone

MRI Today

2011-11-28T13:26:00.000-05:00

I talked to Dr R's nurse today to find out if he needs to see me in person before I start taking pazopanib. She said that the call I got last Wednesday, that must have been a mistake, because he does not need to see me.

I took the opportunity to describe all this night time pain, and she asked a lot of questions and then said that she would talk to Dr R and get back to me.

He called me in person. He wants me to have an MRI ASAP so that we can rule out anything serious going on with my spinal cord. Definitiely I cannot start pazopanib till we figure out what is up with this pain, just in case there needs to be surgery.

He also said this sounds like a nerve issue (just what I thought!) because of the shooting pain and therefore is not surprised that the narcotic painkiller is not helping. So he is also calling me in a prescription for a nerve painkiller that I can start taking in addition to the oxycodone.

So I will leave work at like 2:15 and zoom up to Durham for an MRI.

MRI

Man-eating Rabbit Invasion

More Rusty Iron

Millionaire Retail Investors

Moldy Rancid Ice-cream

Many Ravenous Invertabrates

Thanksgiving Weekend Ends

2011-11-27T23:55:00.000-05:00

This has been an awesome Thanksgiving weekend.

I took Wednesday as a vacation day, and Lou and I drove to Tallahassee, Florida, to meet up with Cindy, Mike, Brian, Will, and Chris for Thanskgiving. The drive took 10.5 hours, with quite a few stops for bathroom breaks. We had virtually no traffic. We listened to a Douglas Preston book called Impact, which was enthralling.

I felt fine driving all that time. Sure, I had to drink a lot of caffeinated beverages to stay alert, but that was no problem. Although, I can definitely say that I do not like the taste of Diet Pepsi with Lime, even though I appreciate the caffeine.

We arrived just after 8:00PM on Wednesday, checked into the hotel, and popped next door to a steakhouse for a late dinner with Cindy and Mike. It was great to catch up with them. It's funny to think that we have seen them more this year than ever: July, for the cruise; October, for the football game; and November, for Thanksgiving.

Cindy did a masterful job of organizing a fabulous Thanksgiving dinner to occur in a hotel without an oven! (The place was full, and we did not get rooms with ovens, although we did have kitchenettes.) There was turkey and ham, plus all the traditional side dishes. The boys were in charge of heating up the meat in the oven in a girlfriend's apartment. Cindy nuked everything else. We ate outside in a charming outdoor dining area with a huge table, grill, and firepit surrounded by couches.

During dinner, we did not actually each say what we were most thankful for, but I kept thinking about how grateful I am for Lou, for all my friends and family, and especially that I was feeling good enough for us to make the trip.

After dinner, the Dolphins were on TV. i wasn't watching the game. I was playing Words With Friends with Will, and he killed me.

I can't hope to tell you about every fun minute. There were a lot of laughs. We even saw a movie, Tower Heist, which didn't start off funny but ended funny.

Lou and I got up super early on Saturday so that we could drive home. The traffic was a little crazy. People semed to be driving very aggressively. But we got home safe and sound, and today we picked up Bailey from the kennel, so our little family is complete again.

There was a dark side to the weekend. Every night, my left hip and left leg would start to hurt around bedtime, and then really kill me once I crawled into bed. Something about lieing down makes it worse. I had to take the oxycodone every night, plus Advil. And still, I would wake up in pain every morning. On top of that, I have had a sore throat for days. It's like I'm fighting off some bug.

So, what am I doing blogging after eleven on Sunday night? It's the pain again. I actually went to bed at 8:30 tonight because I was exhausted and because I wanted to be well rested for work tomorrow. I took 2 oxycodone at 8:30, but tonight they didn't help at all. The pain has just gotten worse and worse. I could not sleep. Around 10:00, I added 2 extra strength Advil. Didn't help. Finally I could no longer just lie there and hope for sleep. So I snuck out. But Lou woke up anyway.

At 12:30, I can take more pain meds.

I probably shouldn't blogging right now, because I am feeling very sorry for myself right now. But the pain has decreased -- because I am sitting up. Lou suggested that I try sleeping in the LazyBoy recliner in my office, and so that is my plan, once I am done talking to you.

I don't know what this pain is. I am guessing it's my poor psoas muscle. Plus, there has to be something going on with nerves, because the pain shoots down my leg. The outside of my lower calf really hurts, for no reason. My left foot is extra numb. And I am a bit unsteady on my feet, which is really not cool.

Oh, but chemo arrives tomorrow! Something to look forward to!

I am a little iffy about when I will start taking the pills. My plan was maybe Monday night, maybe Tuesday morning, but Dr R's receptionist called my cell last Wednesday for me to come in THAT DAY so I could see him before starting the pills. I had to tell her it was impossible -- I was already driving to Florida, and I could not turn around and come back.

I don't know why he wanted to see me. He won't be back in the office till this Wenesday, so I might have to delay starting the chemo till Wednesday. Right now it is all up in the air.

I will talk to him about all this pain.

Drugs to Arrive on Monday!

2011-11-22T15:06:00.000-05:00

I talked to the specialty pharmacy this afternoon, and the nice lady on the phone arranged for the pazopanib to be dispensed to me and delivered on Monday by UPS. Woo Hoo!

This drug is $6,863 per month (wholesale). My copay is just $60 per month. That's virtually free.

Wow, this is great. I'll finally start chemo next week. That reminds me, I had better call Dr R to let him know. He wanted me to inform him before I start taking the drug.

Oh, and my blood pressure this morning was 128 over 76. Nice.

Sleepless Night

2011-11-22T13:27:00.000-05:00

Last night, I was in pain. Maybe it was just a 3 on a scale of 1 to 10, but it was unrelenting. It was pain in my left hip, which is the area where the psoas and irradiated tumor are.

I took Advil before going to bed. It didn't help at all. I could not fall asleep.

Luckily the dog barked and woke Lou up at 11:00PM, so I took that opportunity to ask him to get me a pain pill. Although that first pill made a dent in the pain, it did not solve the problem.

At about 12:20AM, miserable, I woke Lou up and asked for a second pain pill. (The prescription says, one ot two at bedtime to help with pain.)

After the second pill, I still could not sleep! What a drag. But two pills is my limit, so I just stayed in bed, waiting for sleep, waiting for some relief. The last time I remember looking at the clock was 2:30AM.

My alarm went off at 6:30AM, because I had a lot of things to take care of this morning before work.

I actually feel okay today, even though I did not get much sleep. And I am not in any pain at all. Go figure.

Fabulous Genmai Cha Tea

2011-11-18T12:59:00.001-05:00

At the suggestion of my acupuncture practitioner, I started drinking a green tea called genmaicha. It contains roasted brown rice, and some of the rice kernels are popped and look like popcorn, so it's sometimes called popcorn tea.

It is really yummy. Both Lou and I are drinking it because it is so tasty. It was tough to find. We closely examined like 200 boxes of tea in the tea aisle at the impressive Grand Asia Market in Cary with no luck. So I searched the web, and it came in the mail.

At work, for myself, I have a package of loose tea and a tea strainer, but I got tea bags for Lou. A lot of reviewers online complained that genmaicha tea bags make weak tea, so I ended up buying Lou some pretty pricey tea bags from Stash. These tea bags make a super cup of tea! He's very happy. But he has no idea how much it cost. Shhhh, don't tell him that it's 75 cents per cup. He might flip. (But he's worth it.)

Genmaicha is supposed to help with inflammation. I guess my inflammation is down-down-down because my pain is still gone-gone-gone.

The pain virtually disappeared once I started acupuncture. (I have had three appointments so far.) This week, I did experience some mild, short-lived discomfort on a couple of days. But, before acupuncture, I was in much more serious discomfort every day. So I am pretty happy about that.

Yesterday afternoon, I went to Duke for some labwork and an EKG that were required before I can start the new chemo. I still have no idea when chemo will start. The pharamacy has not called back yet (they said that they would) to arrange payment. I still don't even know what my copay will be. But I am fine waiting, now that I know I will eventually get the drug.

The only problem with so much time going by is that it will thwart our efforts to determine whether the new chemo is working. Like, say the next scan shows a little tumor growth. There will be no way to tell when that growth occurred, and if it was impacted by the new chemo:

Maybe the tumors grew a lot till the chemo kicked in, and then they shrank a lot...
Or maybe the tumors grew the entire time and just laughed at the new chemo...

We won't really know if the new chemo is working till yet another scan! Unless of course the next scan shows really good results.

I Have Been Approved!

2011-11-15T09:34:00.000-05:00

Dr R called me on my cell this morning as I drove to work. He told me that he just received a letter from my insurance informing him that I have been aproved for pazopanib!

The letter I got on Saturday was for the first appeal, which was denied. But the second appeal was approved. (I didn't even know there had been a second apeal!)

HAPPY DANCE

I get to take the easy chemo! I get to strangle the tumors by denying them new blood vessels!

I have more to say, but I have to get to work.

Sticker Shock

2011-11-14T14:47:00.000-05:00

I called around today to find out how much it would cost to just pay for the pazopanib. Oooh, baby, it's expensive. The regular wholesale price is $6,863 per month. The lower price that was negotiated by my insurance is $5,600.

CVS would be happy to work with me to come up with a price, in case I want to self pay. But it sounded like the best I could hope for was the $5,600 that my insurance would have paid. Still too high!

Unfortunately, I do not quality for any help from the manufacturer, GlaxoSmithKline. That includes their programs to sell it to you for a lower price, as well as their programs to find charitable organizations to help you pay for it.

But, we actually have not exhausted all our appeals.

Wicked Bummah

2011-11-13T17:40:00.000-05:00

In the mail on Saturday, mixed in with a whole bunch of catalogs, I got a letter from my prescription plan informing me that my appeal was denied. The plan specifies that they will not pay for pazopanib unless you have kidney cancer.

Wicked Bummah. (That's what Patsy and I came up with on the phone Saturday night to describe this new development. For those of you who can't hear my voice in your head, that would be "wicked bummer" or "very bad.")

I was pretty upset Saturday night. I had my heart set on what I assumed would have been easy chemo, based on the handout that they gave me at the clinic. No injections, no nausea, no hair loss! But you know, I really have no idea if it would have been that easy -- or if it would have done any good at all.

I think part of my disappointment and unhappiness is just that I like to know what's coming up next, and I had thought that pazopanib was next. Now, I do not know what's next. Not knowing can be hard.

Just for the heck of it, at Lou's insistence, tomorrow I am going to call the specialty pharamacy to find out how much it would cost to get it anyway. It's probably too expensive for us to pay for ourselves, but it can't hurt to ask.

Something else I was thinking about today: I really have excellent insurance, and they have paid for a lot of cancer treatment. (I actually do not even want to know how much 5 different chemos plus fancy CyberKnife radiation plus all those CT Scans has cost.) So it's probably about time that they said no to something.

I guess I need to call Dr R on Monday and see what comes next. Maybe we appeal again, or maybe we fall back on one of our other options. I don't really feel like listing my options for you right now. Suffice it to say, there are a couple of options.

I might chicken out and not make the call to Dr R on Monday. Thanksgiving is coming, and we would like to drive to Tallahassee to see Cindy, Mike, Brian, and Will. I would sort of like to hold off starting chemo till after that.

But I guess if I start thinking like that, then my next big idea might be to wait till the holidays are over. Start chemo in the New Year. Yeah!

It's probably better to think about starting chemo sooner rather than later, so I can start killing some cancer cells sooner rather than later.

What Day Is It?

2011-11-11T13:19:00.000-05:00

I woke up this morning to the charming sounds of Lou playing fetch with the monster on the back deck. Thump! Bang! Scrabble scrabble scrabble. "Good girl!" Thump!

I smiled and stretched and wondered what kind of wonderful things were in store for me on this Saturday morning. Maybe we could go for a long walk! Maybe not, since it sounded like Lou was doing his best to exhaust the puppy by playing fetch.

Eventually I got up, wrapped myself up in a pink robe, wandered out to the kitchen, put the water on for tea, and basked in the happiness of an early weekend morning.

Except, today ain't Saturday, which Lou was QUICK to point out when he and Bailey finally came in to hear my plans for our long walk...

It's Friday.

OH MY GOD.

Well, nothing to worry about. This kind of thing could happen to anyone -- and not just to retired people for whom every day is the same wonderful vacation day. No reason to think this is some kind of neurological issue stemming from all the chemo. No. Don't be silly.

Monstrous Distractions

2011-11-10T06:40:00.000-05:00

Yesterday, the monster provided me with a lot of distraction.

We started with an early morning vet appointment, so that she could get the bordatella vaccine again. It's required for her because she's going into a kennel over Thanksgiving weekend. Oh, did I say kennel? I meant to say pampered pooch spa resort.

Anyway, Lou and I spread out a blanket in the back, because Bailey gets car sick. It's a short 20 minute drive to the vet, and when we got there, I saw that there was no vomit on the blanket. "Good girl!" I said. Then I saw the vomit all over the wheel hump and wall. I guess she didn't think it was a good idea to throw up on the blanket. She must have made a big effort to throw up off the blanket (and unfortunately all over my upholstery).

We brought her into the vet, then I came out with paper towels to start the cleanup. Dear God. I did the best I could, but I knew I would have to finish up at home with rags and cleaner.

Anyway, the vet appointment went really well. Bailey actually has a mild case of mange, probably from the stress of coming to live with us. Ha! Lou and I are pretty stressed, too. Surprised we don't have mange.

We go to Swift Creek Vet at the corner of Penny and Holly Springs. They have taken care of Molly, Samantha, and now Bailey. They have been awesome.

When we got home, I kept working on the car till it looked fine and smelled fine.

I didn't get to the office till noon. But I stayed till 8PM, so I got a full day in. There is a lot going on right now. I have a lot of writing to do, and I love doing it. I am especially motivated to work really hard right now, in case I have to miss some days when chemo finally starts.

Chemo. No word yet on whether BCBS will approve the pazopanib.

Back to Bailey. Next time, we're going to use a much bigger blanket. And we'll keep the windows open. She loved the breeze on the way home. Maybe the breeze will keep her from barfing. Plus, the vet suggested that we start taking her on really short trips, like just around the block, to get her used to the sensation of being in a moving car.

But April gave me the best advice. Next time, don't feed her till AFTER the vet appointment!

All This Attention

2011-11-08T08:04:00.000-05:00

Yesterday at lunchtime, the pharmacy computer called my cell phone to inform me that an appeal was underway regarding a prescription medication that I had recently been prescribed.

A couple of hours later, I got a phone call from a real person, a pharmacist at Duke. I had met this pharmacist last Thursday, when she checked whether I could get the drug, brought me a handout on the drug, and then ran through all the information about how to take the drug and what to expect. She didn't know the prescription was not approved yet, so I updated her, and she promised to call back at the end of the week.

Now I am just waiting to see what happens. Will I get the drug, or not? On which day will I hear? We ought to have a pool. Place your bets!

Still Feel Great

2011-11-07T08:27:00.000-05:00

Last night I took 2 Advil before going to bed, but other than that, I had a completely pain-free weekend. That is awesome!

Also, I have to stop and remind myself how great it is that my stomach no longer hurts.

On Sunday afternoon, I went for a walk and ran into a nice lady in the neighborhood who also has cancer. We are both about to start treatment again soon. For her, it's radiation and chemo. For me, it's just chemo. So we were commiserating about how you just have to psych yourself up for it. She said people sound so amazed when they tell her that she has a great attitude, but they have no idea how much work it takes to keep your attitude great.

This morning, I ordered dog tags for the monster, and I also went online to make sure that the info for her microchip is correct. So if anything happens, we can get her back.

Fall Back

2011-11-06T07:42:00.000-05:00

I am up again early today. And because it's time to fall back, it's even earlier that I think.

What a funny weekend!

I might not have slept late yesterday, but I did run out of steam around 3:00 after searching three stores unsuccessfully for a fireplace screen. So I took a nap. I totally crashed. Lou came in and woke me up at 5:30 to ask if I was up for a pizza run. Oh yeah, baby.

I haven't had to take Advil at all for the last couple of days. No tumor pain! It's sort of amazing. Maybe the news of impending chemo scared them into behaving themselves. Like, when I was a little kid, and bedtime was approaching, I would lie really still on the living room floor where the family was watching TV in the hopes that neither parent would notice me and send me to bed.

Speaking of parents -- last night my friend Susan gave me photos of last Christmas Eve, when we had dinner together with my parents. Really nice pictures! Of really nice people! (Susan, do you have the photos in digital format so I can post one here and email them all to my parents?)

Lou turns fitty in December. (He thinks it's funny to pronounce it like that.) We had planned a trip to Florida, but MY GOD the airplane ticket prices are high. So we think we are going to stay home instead and have a combined New Year's Eve and Multiple December Birthday (Lou, Gail, Brent, etc) party instead.

I think this new plan sounds like a huge blast.

Roadblock

2011-11-05T07:53:00.000-04:00

Early Friday afternoon, I was plugging away at work when my cell phone rang with an unknown number. I'd been keeping it close, with the ringer volume way up, to catch a call from the specialty pharamcy about my prescription for pazopanib.

But it wasn't the pharmacy. It was Dr R, telling me that BCBS (my insurance) said no to the pazopanib because it's not officially approved for leiomyosarcoma (although it has shown itself to be effective against leiomyosarcoma). There is an appeal process, Dr R explained, and he had already submitted all the paperwork. Nice.

So this might just be a bump in the road, a temporary roadblock. We'll know by the end of next week. (To be honest, he said we would know "early" next week, but I have learned that everything takes longer than expected.)

Of course, if it turns out we can't change BCBS's mind, then we have other options.

I am cool with the delay. Actually, it might be the reason for me being up so early on a Saturday, instead of sleeping in. I woke up at 7:00 and thought, "Let's go, let's go! Let's have some fun today. Chemo gonna start soon. Must have fun before chemo starts."

We have lunch plans with Brent and Laurie, and then we are shopping for a fireplace screen to keep the monster away from the flames, because it's been getting colder and we would like to light the fire. We have already had to spray Bitter Apple on the little rocks in the gas fireplace because she likes to chew them. "What is that crunching noise?!"

Tongue Twister

2011-11-04T13:47:00.000-04:00

The next chemo I am going to try is called pazopanib. It's pronounced pa-ZOP-a-nib. Try saying that 5 times fast.

It's for kidney cancer, but it has shown itself useful against other cancers, including leiomyosarcoma.

This drug inhibits angiogenesis, which is the physiological process where new blood vessels grow from existing blood vessels (according to wikipedia). I guess the the idea is to starve the tumors by not letting them form blood vessels.

By Monday, I am supposed to hear back from the specialty pharamacy whether I really can get this drug. We are waiting for final approval from BCBS. I'm pretty hopeful.

Yesterday was tough. It was actually tougher than it needed to be because of the resident. (There is often a resident doctor who is on rotation in the department, and he or she comes in first and asks a lot of questions, and then comes back and observes while Dr R does his thing.)

So this one asked the usual questions, and then she told me that the scan results looked good: there was only a small amount of growth in the pancreas, but the rest of the tumors were basically the same. I was surprised that she was telling me this, because no other resident or nurse had ever given me news about my results before Dr R. But I was also thrilled. I thought, "This news is so good, he didn't want me sitting in here worrying while he was busy elsewhere, so he asked her to give me a update." She left, and I hugged Lou.

But then Dr R came in and said that all the tumors grew, and that the one in the pancreas grew by a centimeter, which is about a 25% increase, and that we needed to consider chemo again.

Crash. All happiness gone.

I didn't bother saying anything to Dr R about what the resident had said because I had more important things to deal with, like, what kind of chemo we would try. Training her is not my responsibility. But I sure hope that she was paying attention, and that she is more careful in the future.

So we ended up talking about 4 different options, and my mind was awhirl with trying to decide which one I wanted to do. How do I know what would be best?

Dr R left the room to make some inquiries, and I said a quick prayer asking that God please make it clear which option was the right one, because I had no idea how to proceed. Then Dr R came back and said that pazopanib was his recommendation, based on the hospital pharamacy telling him I would probably get it for $60 per month (versus $5000 per month). Prayer answered.

Lou and I both took the afternoon off. Neither one of us would have been any good at work. We took the monster for a long walk and then hung out at the clubhouse, on the back porch, having beer (Lou) and soda (me) and appetizers (both of us) and enjoying the late afternoon sun.

Oh, and the monster loves little ice cubes.

The waitress very sweetly brought the monster a bowl of water, and the monster drank some but then dumped out the rest and tried to eat the styrofoam bowl. Nice.

Time for More Chemo

2011-11-03T12:56:00.000-04:00

The news was not so good today.

All the tumors grew, except for the smoking charcoal blob that we irradiated.

So got to start chemo again.

I'll check back in later to tell you which chemo we picked.

Right now we are somewhere in Durham eating lunch.

Sent from my Verizon Wireless Phone

Oblivious to What's Happening in Front of Me

2011-11-02T09:11:00.001-04:00

Last night, Lou and I were watching an old Criminal Minds on our DVR and playing Words With Friends on our Android phones. What a great evening... We were completely oblivious to Miss Bailey, our 7 month old Golden Retriever pup. Sure, when she nudged us with her tennis ball, we tossed it across the room. But we weren't really paying attention.

Suddenly I noticed that she had dragged one of our Turkish carpets in front of the TV. Yikes!

It was the small carpet from the front door. She had dragged it over and CHEWED it up right in front of us. The floor in front of the TV was littered with scraps of wool and tassles, all damp with dog spit.

I yelped and jumped up and grabbed the carpet up to see the damage.

It's bad. Anyone know of a carpet repair magician in the Raleigh area? Maybe they can just make the entire carpet smaller... I don't know. I love this carpet.

Lou and I bought this carpet in 2004 when we went on our first Mediterranean cruise and visited Turkey for the first time. (We loved Turkey!)

I have great memories of the entire carpet purchasing process. There was a family from Japan there at the same time, purchasing multiple SILK carpets for their home, and our poor salesman got stuck selling us WOOL. Lou had just one sip of some God awful murky alcoholic beverage. When we were ready to go, I was amazed to see them fold up both carpets and fit them into a rolling suitcase so we could easily carry our treasures home. All the ship crew said, "Bought a carpet?" as we rolled the suitcase to our cabin.

Oh yeah, we bought two carpets on that trip. The other one has not been chewed -- yet. Here's the culprit, Miss Bailey, and Lou on that other carpet this morning.

She is a sweet, destructive, little love bunny. So is he!

Anyway, we have rolled up both carpets and shoved them into a closet. It would be foolish to leave the bigger one on the floor, in her domain, now that she has gotten a taste for wool.

This was a fun distraction from the reality of Scan Day. This afternoon I go for a CT Scan, and then tomorrow I get the results. I have had tumor pain, so the news might not be super fabulous. We'll see. My plan is to post the results from my phone to this blog after the appointment tomorrow morning.

Happy Halloween

2011-10-31T10:37:00.001-04:00

I feel great today!

I spent the weekend in my pajamas getting over that stomach bug -- and ironing. Got a lot of ironing done. This morning when I went into our closet, I was so happy to see all the clothes in there. Till this weekend, there had been a lot of wrinkly clothes being held hostage in my office.

Hey, I saw a tee shirt in a catalog that said:

The opposite of irony is wrinkly.

I love it!

Today we are supposed to have rain showers, and I hope that they do not keep the trick-or-treaters home tonight. Halloween is a lot of fun.

We have a new puppy, though, and we are not really sure what she is going to think about all the little monsters coming up onto the front porch and ringing the doorbell.

Foolish Optimism

2011-10-29T09:09:00.000-04:00

I should not have blogged that the Prilosec was working. My stomach was killing me yesterday, and it is killing me again today. Tums are not helping.

I actually ended up leaving work early yesterday because I just couldn't deal anymore with this stomach pain. At about 2:45PM, I finally finished a huge urgent project that has kept me on high alert for the last two weeks. I had to finish the work, so I ignored the pain and just kept working. But once the urgent project was complete, that was it. I was done. I went home and slept for 3 hours! I felt better when I got up, which is strange. Why would sleep help?

Anyway, this morning the pain is back.

We have plans today, and I don't want them ruined. We're seeing Rock of Ages at the DPAC and then going to dinner at The Magnolia Grill with John and Pat. At least, that is the plan. Lou set a deadline for 11:00AM if I want to back out. He thinks it might take awhile to find someone to give our tickets to. Shouldn't be that hard! Who doesn't love eighties music?!

On Monday morning, I am going to call my primary care physician to report than the double dose of Prilosec is not working.

I am going to try Advil next.

Hey, I tried acupuncture for the first time, and it was awesome, but I am just not in the mood right now to tell you about it. Check back tomorrow...

Bumped

2011-10-26T17:17:00.001-04:00

I got bumped!

But I wasn't bumped off a flight by some airline. My CT Scan was bumped into next week.

Dr R called me himself last week to let me know that he needed to move my appointment. Weeks ago, the receptionists at Duke changed the appointments for almost all of his patients so that he could go to Chicago this week for a sarcoma conference. But apparently three people fell through the cracks, and I was one of them.

I didn't mind at all postponing my CT Scan for a week. No news is good news. Keep me on cancer vacation as long as possible.

So, next Tuesday I will be scanned, and next Wednesday Lou and I will hear the results. Make sure you check back...

I have had a little pain lately, and so I am wondering if the scan will show some tumor growth. There is no reason to worry about that today. I want to enjoy my extra week off.

The last time I posted any news here, it was August and I thought that my stomach pain was gone. Well, I was wrong. My stomach pain actually got worse. My primary care physician sent me to a GI specialist, who stuck a camera down my throat to take a peek at what was happening in my tummy. That was an interesting procedure.

Anyway, the result was confirmation that the lining of my stomach is inflamed (gastritis) but no ulcer, no infection, and no cancer!

So I am now taking Prilosec twice a day. This time, I am really sure that it is helping. The stomach pain has lessened -- which is wonderful, because if I never chew another Assorted Berry Tums, it will still be too soon.

The worst part of the whole stomach pain fiasco was that I wasn't allowed to take any Advil for a few weeks, because they thought that I might have an ulcer resulting from too much Advil. Without any Advil at all, my minor tumor pain got worse and worse, till I could not sleep without a narcotic. I wasn't happy about that. So I started sneaking Advil, always with food, and the pain immediately dropped to a very manageable level.

It was such a relief when they determined there is no ulcer and that I can take Advil again.

Tummy Aches Finally Gone

2011-08-31T08:30:00.000-04:00

I haven't mentioned my stomach aches here, but if you have been hanging out with me, you probably have seen me hunched over for 5 minutes, pretty unhappy.

Recently, I even started complaining out loud about them. One Saturday night, when the gang went out for pizza, I didn't order anything because I just felt awful. (I was there for the fellowship!) My friends were like, "Karen, call your doctor," but I was like, "No, no, I'll just wait for my next scan."

For probably 4 or 5 weeks now, I have gotten these stomach aches at least twice a day. They last from 5 to 15 minutes. I tried to track them, to determine some kind of cause and effect, but with no luck. They didn't seem to be related to any time of day or food or thirstiness or stress.

They were actually awful.

I have been feeling wonderful, except for these stomach aches.

I wasn't worried that they were cancer related. I just assumed that they were cancer-treatment related!

After all this chemo, my stomach ain't what it used to be. More easily upset. And Lou reminded me that I had complained about similar pain like a year ago, and Dr R had me start taking Zantac 75 twice a day, and it went away.

So when I saw him last week, I filled him in. He started me on Prilosec every day. He gave me a prescription for the generic, to save me money.

The first couple of days, there was no effect. Stomach aches continued unabaited. Then on Monday, I discerned that the stomach ache was less intense. The meds are working, I thought. And yesterday, I did not have even one. They are gone! Yahoo!

Fresca for Sale

2011-08-26T13:55:00.000-04:00

Yesterday Lou and I got to the Duke CLinics a little early, so we wandered over to the gift ship to get a beverage. The first thing I saw in the refrigerator case was Diet Dr Pepper, which Lou really likes. It is kind of hard to find, though.

Then I saw the cans of Fresca.

I couldn't believe they had Fresca for sale. I LOVE FRESCA. And it is never for sale outside a grocery store.

So I got a Fresca, and Lou got a Diet Dr Pepper, and we went off to my appointment to hear what turned out to be awesome good news.

Great News: Stable Disease

2011-08-25T14:31:00.001-04:00

Hey, the news is fantastic. All the tumors stayed the same.

Nothing grew, what a relief.

When Dr R left the room, Lou gave me a huge hug. We had apparently both been pretty anxious, even though neither one of us talked about it much.

We have been talking about how I have I days of vacation left this year but we would not get serious about picking a destination and timeframe till we heard the results today.

Again, wow, I am so happy right now.

Sent from my Verizon Wireless Phone

Great News: Stable Disease

2011-08-25T14:29:00.000-04:00

Do I Remember How to Blog from My Phone?

2011-08-25T08:05:00.003-04:00

This is just a test to see if I remember how to send in an update from my mobile phone.

I want to be able to let you know the news this afternoon as quickly as possible.

This morning I am feeling pretty calm about the whole thing. Que sera sera!

Sent from my Verizon Wireless Phone

Scan Day is EZ

2011-08-24T08:45:00.001-04:00

Today is Scan Day.

My plan is to work till lunchtime and then head up to Duke. I'll get bloodwork done, followed by the CT Scan.

The only tricky part of today willl be when they access my port. When they flush it with saline, I get a nasty taste in my mouth. During chemo, it's enough to trigger a nausea that lasts for hours. When I am not taking chemo, though, it is just a moment of yuckiness with no lingerling effect. The last couple of times, I have used York Peppermint Patties, which are so amazingly minty I can't even tell they have done the flush. I have some leftover and will bring them along. But I might experiment with simply holding my breath during the flush, see how that goes. I'll get flushed at least twice. If holding my breath doesn't work the first time, then I'll fall back on the mints.

Oh, and I definitely must refuse Tegaderm today. It's a fantastic clear plastic sheet, sticky on one side, that the nurses like to place over the port to sort of seal up the area after they get the needle in. I have always loved Tegaderm. It is awesome for covering an incision so you can take a shower after surgery. But now my skin gets red and irritated when they put it on me, even for just a couple of hours. So I must refuse. Ah, I guess I am a delicate flower...

This morning I walked the 2.2 mile loop. It is really fresh and cool this morning, as if we just had a drenching rain. Did it rain last night? I have no idea.

We did have an earthquake yesterday! It was my third. For a few seconds I thought it was guys working on the roof of my office building, but when it went on for so long, I knew it was an earthquake. All the knicknacks in my office rattled, but nothing fell over or got dissarranged.

So, today will be a breeze, especially since I have a book to read while I sit in the waiting room at the lab and then later in radiology. It's something like The Dance of Death by Douglas Preston and Lincold Child. I am not 100% sure of the title. It is just the next one in the series of novels with Special Agent Pendergast. I am hooked. Every book this team produces is better than the previous.

Tomorrow, Lou and I go see Dr R to get the results.

Genetically Engineer Me Now

2011-08-23T08:41:00.000-04:00

About a week and a half ago, a couple of friends emailed me this amazing cancer news story about how some researchers genetically engineered some cancer patients' own blood to turn it into killer T cells that wiped out their advanced cancer (in 2 out of 3 guys).

Here is a link to a summary, if you are interested:

cancer story at www.businessinsider.com

It was published on August 11, 2011, so this is sort of old news by now, but that's what I get for being on cancer vacation.

I was so excited when I read about this.

Remember when I was taking AHCC to try to boost my T cells? That was last December, I think. I quit when my next scan showed growth and I had to start chemo again. Maybe I ought to go buy another bottle.

Anyway, I realized that I just have to hang in there till this becomes widely available. (Not that there is any hint of me not hanging in there. I am hanging in there just fine.)

Tomorrow is Scan Day.

Test My Calm

2011-08-20T12:02:00.000-04:00

Realizing and then talking about being angry really helped a lot. At first, I felt even more angry and hurt, but eventually all those feelings started fading away.

At some point during the process, I wondered who or what I could to direct this anger toward. Anger requires a target. But nobody knows what causes leiomyosarcoma, so it's not like I can be mad at myself or the cigarette companies like a smoker with lung cancer.

I have felt a rush of anger toward my oncologist when he has reiterated that I cannot have surgery, but being hostile is not conducive to a healthy partnership! And I do want him to be my partner in keeping Karen alive and kicking.

It struck me that the only good target is the cancer itself. So I pictured myself punching a tumor in the nose. I liked that.

Enough about anger! I am feeling very calm and neutral today. Perhaps I ought to go back to that coffee shop this afternoon to test my neutrality.

Will I get upset with the barista again? I think not. I am flooded with feelings of "Live and let live."

I think it helped that there is alot going on right now at work and at home. I have a lot of distractions.

Sir Wilbur got me hooked on Words With Friends on my super new android phone. It's an app that lets you play scrabble online. I actually sort of stink at scrabble, which seems impossible since I am a writer. I still smart years after a game against Lisa Bender who positively killed me with her triple word scores and two letter words.

Also, Lou and I were toying with the idea of having the our friends' teenager come live with us for a few weeks as a sort of cooling off period for Mom and Dad. That fell through, but it was interesting to think about. What kind of ground rules would you set if you had that opportunity? Lou and I were emailing some good ones back and forth... it's probably a good thing the guy in the next office was on vacation, because I burst out laughing a few times on Friday.

They Postponed Me

2011-08-18T13:25:00.000-04:00

Today I was supposed to go for my next CT scan.

But about a week ago,my doctor's office left me a message that they needed to postpone my appointment till the 24th.

When I heard that message, I thought that was an awesome gift. I was thrilled to have an extra week of cancer vacation.

It is funny, though, the way things have turned out. I am sort of worked up today anyway, even though it is not scan day. At lunch, out of the blue, I started telling a good friend that I am angry that I have cancer. This anger has been simmering just under the surface until something silly like a rude barista makes the pot boil over.

So apparently my cancer vacation is over, scan or no scan.

Where is the cheerful Karen who went off on cancer vacation in June?! Who would have thought I would come back angry, especially after all the fun I have had in the last two months.

I already feel better, though. Just saying the words out loud really helped. I need to deal with this. I certainly cannot keep snapping at baristas! Nobody will want to make me a latte.

Good News

2011-06-16T17:04:00.000-04:00

There are too many patients, and not enough doctors!

My appointment today was for 1:30, but we didn't see Dr R till 3:00PM. Come to find out, he had 5 patients scheduled for 1:00 and 4 more scheduled for 1:30! Wow! That is just too many people for one doctor to see. Someone ought to deliver a stern lecture to the people who make these appointments. They shouldn't pile people up like that.

While we were waiting, I tried to get Lou to play patty-cake with me to that old rhyme "Oh Mary Mack Mack Mack, all dressed in black black black, with silver buttons buttons buttons all down her back back back..." and the results were so hysterical that a couple of nurses came into the exam room to see what we were laughing about. Then I tried to do it with both nurses, but we all remembered it differently, and no one could get it going right. That helped the time pass.

When we finally saw Dr R, we got GOOD NEWS that was worth the wait!!!

No new spots were detected. Yahoo!

All the spots in the lungs stayed the same. Yahoo!

The spot in the psoas muscle, as usual, stayed the same. Yahoo!

The spot in the pancreas shrank from 4.9cm x 4.7cm to 3.9cm x 3.9cm. Super Yahoo!

That is a lot to be happy about. I am really happy that the spot in the pancreas shrank, and I am really happy that chemo is over.

We also talked about cryoablation. We're going to wait and see what happens in the August scan before making any decisions.

Dr R was lukewarm about cryoablation because he says that there is no benefit shown to having three tumors in your lungs versus six tumors, but he did say that he would encourage me to go forward with cryoablation as long as I wouldn't be quitting chemo mid-stream to pursue it. I can understand that.

I guess you've noticed that I haven't been blogging lately. I've been so happy that chemo is over, I just haven't wanted to think about cancer. So I'm going back on cancer vacation. I'm not going to think about it, talk about, or blog about it. The only reminder will be when I put a hat on every day, and I can live with that.

So this is goodbye for 60 days.

See ya mid-August!

Strangely Calm on Scan Day

2011-06-15T08:30:00.000-04:00

Today is Scan Day.

I am supposed to get blood drawn at 1:00PM, and then the scan at 2:00PM. So, I'll be going to work for a half day first.

I am strangely calm. Usually, I am a bit worked up for the week before Scan Day, because I spend a lot of timing worrying about worst case scenarios and hoping for a miracle.

But not this week. I haven't been worrying or hoping at all. It's sort of strange. I'm like, "Whatever happens, we'll deal with it."

I wonder if part of my calm isn't because I know that there is some cryablation in my future. Nothing like the promise of really killing a tumor to give you a cheerful outlook.

I also wonder if this good mood isn't because of all the walking I have been doing. I am in my second week of walking every morning before work. (Okay, I missed one day out of the last eleven days.) I've been getting up at 6:00AM so I can get out there before it gets too hot. I've been walking 2.2 miles fast (alone) followed by 0.4 miles slow (with dog). Last weekend, I walked a much longer route, but I haven't measured it in the car yet to see how far it actually was.

When I started walking, it was really hard. I was so out of breath on the hills. But as of today and yesterday, I finally am seeing a huge improvement in both speed and breathing.

They say that regular exercise can have a huge impact on your mood and outlook. So maybe that's why I am cool this week.

If so, I'll just keep walking! Being cool is much better than the Worrying/Hoping Rollercoaster.

What else can I tell you? I am still wearing a hat, but I have a lot of peach fuzz and hope to be hat-free in a month...

I'll get my scan results tomorrow at 1:30PM. So tomorrow night, I'll post again and let you know what happened.

Restless Legs

2011-06-03T07:22:00.000-04:00

It has been quite a week.

I have been struggling with post-chemo problems, but the whole time I have been reminding myself that I took the last dose! It's over!

This time, there was a lot more skin-crawling restlessness. I couldn't sit still. Imagine having "restless legs" for your whole body and brain. At the same time, I was barely functional, so mostly I wandered around the house in my PJs, moving things around like a zombie obsesed with tidiness. Luckily, after 15 to 30 minutes, the restless period would pass and then I would sleep. (This was worst on Saturday and Sunday.)

I knew I was finally getting better on Wednesday when I could not sleep during the day at all, even though I was tired. During those times, I read.

Now, I am still easily tired, but I am feeling pretty good. Yesterday I worked for 4 hours from home. Today I will go in to the office for 4 hours.

Our phone came back on Wednesday morning. It was probably a good thing that we had no Internet access during the worst part of my chemo insomnia, so I could not surf the web and shop late late into the night.

Last night I saw my friend Carolyn, and she reminded me that she and her husband visited me in the hospital on the Friday of Chemo Weekend 5 (the one before this last one). I had forgotten all about it, but a lot of the details came back to me once she reminded me.

I want to thank everyone for all the York Peppermint patties! I got several bags! And they worked great, although by now I am sort of sick of the minty goodness. When I left the hospital on Saturday, I gave one completely un-opened bag to the nurses. The lucky nurses were the ones on the first day, who always got the Girl Scout Cookies.

On my way to work this morning, I have to stop at the doctor's office for some bloodwork, so I had better get a move on.

Home Sweet Home

2011-05-29T05:53:00.002-04:00

I am so glad to be home.

Yesterday the guys dropped me off at home and left to hit the pharmacy and Chinese takeout restaurant. I went right to sleep.

I probably went down for 3 naps yesterday b4 going to bed at 9. In between naps we watched Star Trek Voyager episodes.

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Sent from my Verizon Wireless mobile phone

Almost Ready To Go

2011-05-28T13:14:00.002-04:00

I am getting my last post-med. I am on schedule to leave at 2.

It will make me so happy to leave here.

Chemo Started

2011-05-28T07:46:00.002-04:00

I passed my neuro check, got my pre-meds, and now the final dose of this chemo has begun. Yahoo!

Still on schedule to get out of here by 2:00PM.

Oh What a Night

2011-05-28T05:50:00.000-04:00

I hardly put any sleep time together last night. Every little thing woke me up.

I'm glad to be finally up now at 5:45. It's just easier sometimes to give up on sleep. Plus, I can nap later, especially when they give me the Compazine.

The doctor is suppoed to come in and give me my neuro check, to make sure that I have not suffered brain toxicity from the chemo. They cannot give me my final dose till that happens.

I won't be able to go to Starbucks till after the chemo. Oh well.

Just waiting now...

What a Fun Afternoon

2011-05-27T17:32:00.000-04:00

Gee I had so much fun this afternoon, it's hard to reconcile it with being in the hospital.

Gul from work came at lunchtime, and she brought excellent Thai food from Yum Yum Thai. There was so much that I'll be having the leftovers for dinners tonight too.

We talked, played Uno, and watched part of the latest Harry Potter movie.

We went down to the cafeteria twice to play cards, before and after my big nap. I won the first couple of games, but we ended up tied at 8 games each. Since this was friendly play, we decided not to go for a tie-breaker.

I had such a great time. The hours flew by.

After Gul left, I took another nap. The beeping of the IV woke me up, and I sort of feel as though I could nap some more.

But I wanted to record the events of the afternoon before Zofran steals all the details from my memory.

Oh, and Lou called me on his cell phone to report that the stormy weather has knocked out the landline at my house! So there is no internet at home. That means, when I go home, the only way for me to update this blog is with my phone. The phone company said we might not get the phone back till Thursday!

Early Friday Morning

2011-05-27T05:41:00.001-04:00

I was wide awake last night, from the Decadron, and so I took an Ambien so that I could sleep. It worked great, till security phoned at 1:00AM to ask permission for my mother to come up for a visit to room 9230. Well, I'm nowhere near 9230. I'm somewhere in 9300, not even 9330, so the security guard messed up multiple numbers when he dialed. Luckily after we cleared up the confusion, I fell right back to sleep.

Till 4:30AM.

I was up for the day at 4:30. I have been up for an hour, and I have already taken a shower and checked email.

Oooh, I ordered a paper copy of The Millionaire Next Door yesterday since Lou has been raving about it, and Barnes and Noble sent email that says they they have already shipped it.

My plan is to go to Starbucks when they open at 6:00AM. My nurse said she would unhook me from the IV pole for the trip. Cindy and Mike sent me a Starbucks card, and I finally remembered to bring it with me. Thanks, Cindy and Mike! Lou and I had coffee on you yesterday morning, and I am looking forward to coffee and a scone this morning.

Highlights from yesterday:

Got chemo really early at 3:40.
Got communion.
Watched an hour of the Harry Potter movie.
Chatted with Darlene.
Chatted with Debbie in Seattle.
Exchanged amusing texts with Amelia.
Exchanged amusing texts with Tinalynne in Montana.

When I talked to Lou this morning, he mentioned that he is going out to dinner tonight with Mo and Gail. Lucky Lou!

First Dose Done

2011-05-26T17:21:00.001-04:00

Wow, the power of the Girl Scout cookie! My first dose of chemo is already done. It ran from 3:40 to 4:40. So that means, if everything happens on schedule, I will be discharged at 2:00PM on Saturday, which is fabulous.

I spent some time sleeping early this afternoon. The Compazine knocks me out.

Lou was reading a technology review magazine.

Darlene just dropped by to chat and to bring Lou home. It is always great to catch up with Darlene. Amazingly, she reported that she has met the people who are buying our old house. We haven't even met them! The closing will occur on Tuesday. Selling the old house will be a HUGE weight lifted off our shoulders, let me tell you. Because I cannot be there on Tuesday for the closing (because I will feel lousy) Lou and I have already signed all the papers we need to sign.

In The Room

2011-05-26T11:43:00.000-04:00

At 10:10AM, my cell buzzed. It was a nurse, instructing me to go to the Admissions Desk immediately because they had a bed for me.

I am in my PJs.

Now let's see how quickly chemo.

Final Chemo Weekend Begins

2011-05-26T09:38:00.000-04:00

Lou and I are sitting pretty at Starbucks in Duke University Hospital, waiting for the phone call to tell us that there is a bed available for me up on the 9300 Ward.

It has been a busy day already. We got up wicked early, at 5:00AM, so that we could go for a walk before Mo picked us up at 7:00AM. We got to the clinic before 8:00AM, where I had blood drawn for labs, peed in a cup, and talked to my oncologist's Physician's Assistant.

So now we're settled in at the corner table at Starbucks. Lou is listening to The Millionaire Next Door, which he has been raving about. He's actually using his new Android Fascinate cell phone to listen to this book. I am so jealous of Lou's cool new phone! I have to wait till July to upgrade.

Lou is drinking a Grande Americano, and I am drinking a yummy Frappucino.

The line is out the door! Luckily there was nobody in line when we got here.

Got No Complaints

2011-05-16T08:27:00.000-04:00

I am feeling great this morning. I have no complaints! I am sleeping well, too.

Lou and I sat out of the back deck this morning, listening to the birds and watching the sprinklers while we ate breakfast. There was one goose that just would not shut up! The sky is really blue and clear, but I think it might rain later on. Samantha spends a lot of her time on the back deck, so we are taking our cue from her. Really, I think I would do well to emulate my Golden Retriever. She has such a peaceful outlook on life.

I am really loooking forward to getting in to the office today. It was a drag not being able to get in at all last week.

So, I expect to feel great for the next week and a half... then I go in for Chemo Weekend 6, the final chemo weekend for Ifosfamide. That will be a cause for celebration. Although, the nurses on the 9300 ward are so sweet; they make the chemo weekend as pleasant as possible.

Every time I think about the possibility of cryoablation, I get really happy. It might not happen for months though. Definitely we have to wait for the next CT Scan, which will be in June. And then we might decide to wait for the next scan after that, which would be August. That would give me time to bounce back from chemo.

Three Migraines in Two Days

2011-05-13T13:38:00.000-04:00

Jeepers, it was crazy. Three migraines in two days.

The first one was Wednesday morning. I had already been loggeed on to work for awhile when I noticed the blank spots that are the earliest warning for me that there is a migraine coming. I took Maxalt really fast, was useless for awhile, but then was able to work on Wedneday afternoon as if nothing had happened.

Then on Thursday morning, I saw blank spots again. I took the Maxalt, but it did not work quite as well. I could not read, watch TV, or sleep. I just hung around in the dark sort of complaining. Lou stayed away. The migraine lifted -- only to return as another migraine in the afternoon! And that one was bad. I ended up taking Excedrin Migraine finally, and that helped a lot. But I was useless all day.

I did weed a flower bed briefly, but bending over sort of hurt my head.

So all day today I have been watching for another migraine. None has come, thank God!

I worked for 2.5 hours this morning, and then Lou and I went out to the bank, Home Depot, and then Dalat for lunch. I had awesome pho! There is no way I am dehydrated. (Someone suggested that the migraines might be caused by dehydration, so today for lunch I ate Vietnamese soup.)

Right now, I am finally back. Maybe I should take a nap before I log on, though. Yes, I am going to nap -- or at least try to -- because I don't want to do anything that will start another migraine.

Tomorrow we have tickets to see HAIR at the DPAC! Neither one of us has seen it. It's sort of funny that I will be seeing HAIR when I have none.

(This post might seem vaguely familiar to some of you. Something happened to Blogspot this week, and my last post was lost. So I just tried to quickly recreate adn update it. That post was all about migraines, too.)

Migraines Wednesday and Thursday Morning

2011-05-12T09:48:00.000-04:00

Jeepers, two days in a row I get a migraine.

Yesterday I caught it really early and took the Maxalt early enough so that the migraine was minor and I actually worked all afternoon.

But today the migraine was a bit more advanced before I caught it. So now I have more of a migraine. Bummer.

Is That My Phone Ringing?

2011-05-11T08:43:00.000-04:00

My cell phone has been in my pocketbook since we got back from Duke, and a couple of times yesterday, I thought I heard it ringing. OK, I know I heard it ringing. I just couldn't get to it. Nor apparently can I check voicemail. (But I have kept on top of email.)

There has been no nausea this time, which is super awesome.

My main problem has been complete exhaustion, the kind where you're crashed on the couch and hear your phone ringing but can't be bothered to budge.

I have slept a lot more this time than in the past. I think that is good, because as a result, I have not been argumentative or miserable. When I start to feel bad, I go right to sleep. After about an hour, I wake up feeling fine. This is way better than last time around, when I tried to stay up, when I tried to push through the exhaustion, and I ended up being unpleasant to be around.

In my awake time,s I have read half of A Walk in the Woods, by Bill Bryson. (Thanks for the recommendation, Christy, I am enjoying it.)

I also watched some movies: The King's Speech, Stakeout, Heaven Can Wait (with Don Ameche), and Curly Top (with Shirley Temple).

This morning, right now, my head is clear and my energy is high. My plan is to work for 2 hours, sleep, lunch, and then work for another two hours this afternoon. It sounds arduous, right? Ha!

Good News

2011-05-10T06:28:00.000-04:00

Yesterday's consultation with Dr C went really well. He talked to us for about 30 minutes.

He explained all about both cyroablation and radiofrequency ablation (RFA). They are both serious procedures; neither one sounds like a walk in the park. For example, he uses conscious sedation for both because during the first part when he is inserting the needle probles into the tumors, he needs the patient to hold their breath at certain times, so that the tumor is not a moving target. Yikes!

It turns out that I might be a better candidate for cryoablation (freezing) than RFA (heating), because most of the lung tumors are located along the periphery where all the nerves are.

With RFA, more of the surrounding normal tissue is destroyed. With cryoablation, less of the surrounding normal tissue is destroyed; that is, when the cold wears off, the normal tissue wakes back up. When the tumor is on the periphery, it is better to use cryoablation to save the nerves, so you don't end up with areas of numbness along the ribs. (I already have enough numbness down my leg from the CyberKnife, ha ha.)

Anyway, Dr C is going to talk to Dr R to come up with a plan. There is no rush, because all the lung tumors are really small.

This was great news. I had a great day yesterday. Of course, I slept alot.

John's Driving This Morning

2011-05-09T07:40:00.000-04:00

John next door is driving Lou and me to Duke for my appointment with Dr C to talk about radio frequency ablation. I might have been able to drive there, but I wouldn't have enough steam to get us home.

I am looking forward to hearing whether I am a candidate for RFA. That would just be the first hurdle though. Next we have to get BCBS to pay for it.

I think that I will be okay no matter what I hear today.

Home and Napping

2011-05-08T13:18:00.000-04:00

I am home!

We got home some time after 9:00PM last night. It was great to be able to pet Sam.

I woke up today at 5:30AM, and felt okay. I have gone down for two naps so far. I'm feeling fine, then I get wonky and need to sleep for likean hour and then I am fine again. So right now I am in a fine window, and Lou is heating up soup for lunch.

We've walked a bunch of TV, and I did a load of laundry, all my PJs from the hospital. I always wash those PJs right away, like they have the stink of the hospital on them and I can't wait to get 'em clean.

I tried to call my Mom to wish her a Happy Mother's Day, but the call went to voicemail so I left a message.

That is all I have for now. No nausea! Yippee!

Mac-n-Cheese

2011-05-07T12:51:00.000-04:00

I just had lunch. My entree was mac-n-cheese, and it was surprisingly good. Yesterday's lunch was pretty gross, beef stew on rice, supposedly. So I wasn't expecting much today.

Lou is actually bringing me a roast beef sandwich from home, which now I will probably eat for dinner.

Today has been fine.

I woke up at 4:00AM because someone took blood. I was wide awake till 6:30, and I slept till 8:30. I have gone for several walks and even sat outside in the sun for 30 minutes looking at cartoons from France in 1954. Sort of funny, sort of strange. There is a shelf of random books in the Patient and family room here, some strange treasures.

Lou should be arriving here any minute. Joe and Peg drove him.

Tonight at 8:45 Pat and Carl will drive us home.

Can't wait to be done! Definitely killed some cancer this weekend.

BEEP BEEP BEEP

2011-05-07T02:53:00.000-04:00

The frantic beeping of my IV just woke me up.

I glanced at the clock, and in the dark I thought it was 6:10AM. I was so relieved that the night was over. But then I turned on the light and saw that is was actually 2:30AM. Lots of night left to try to sleep through.

The thing beeped for long enough to really wake me up. I used the call button to let them know about it, and then I did something a little snarky. I opened my door to share the beeping with the world. I figured that would make someone come faster.

Some other nurse popped in and shut off the beeping and said it would be okay for another 30 or 40 minutes, that there was enough left in the saline bag ttill then, but then it would beep again. She left before I could point out that I would just have fallen asleep again when the beeping resumed, and that was less a than ideal plan.

But luckily my real nurse popped in with a huge fresh bag of saline. She apologized for not sneaking in to change it before it woke me up. She had actually also snuck in at 1:00AM to hang my second doze of Mezna, and even turned on a light, and I never even stirred. Nice!

Okay now I think I am sleepy enough to try to go back to sleep. Lets hope I make it through till 6:00AM this time.

A Little Birdie Told Me

2011-05-06T16:48:00.000-04:00

Carolyn and John arrived at about noon to keep me company for a couple of hours.

"A little birdie told me that you needed this," Carolyn announced as she handed me a grocery sack.

Mystified, I peered inside and found York Peppermint Pattis! Two different kinds! Now I do not have to ration them anymore, which is a huge relief because if turns out that a half is not always as good as a whole.

We had a great time, and they stayed till 3:00PM. I warned them that my memory is so bad, the next time I see them I probably won't remember this awesome visit unless they remind me. So it seemed like a good idea to capture their YPP generosity on the blog! And to take this opportunity to thank the Little Birdie too.

First they watched me eat my strangely unsatisfactory hospital lunch, and then we wento down to the cafeteria so they could have lunch. I got a little tub of potato salad in the cafeteria, which redeemed my entire lunch experience.

It seems like we talked about everything under the sun. I had a really good time.

It helped that I was not tired. Doane and Marge dropped by after 9:00PM last night, but I was so tired from the Campazine and Zophran I could hardly talk. I really appreciated the visit though. It's not every friend ON CRUTCHES who makes such a big effort like Doane to come see a person. And I never see enough of Marge.

Rationing My York Peppermint Patties

2011-05-06T07:17:00.000-04:00

If you have been reading this blog, you know that during chemo I am a delicate flower who gets nauseated when the nurse flushes my port with saline.

Last chemo weekend, I discovered that if I put a mini York Peppermint Patty in my mouth, then not only do I not get nauseated, I can't even tell if the flush has occuured yet. (For every other candy I tried, I could still taste the awful flush underneath whatever fruity flavor I was trying, which usually stopped the nausea from catching hold.)

Anyway, I might not have enough mini YPPs to get me through the weekend! I have six and a half left. I started using only a half yesterday when I realized there was a shortage. Amazingly, a half works just as good, but I do have to time it correctly, because a half melts away faster than a whole.

Another way that I am conserving YPPs is that if they come to take my blood, I ask them to stick me in the arm instead of using my port. The lady who did it last night was totally awesome; i hardly felt the needle at all.

So I have to go shopping for a new bag of YPP before Chemo Weekend 6. Somebody remind me...

I slept really well last night, despite being woken up numerous times. I just kept falling right back to sleep. And it was a good rest, because today I am cheerful and optimistic again. (Yesterday I was experiencing some self pity and reluctance to receive chemotherapy.)

Long Wait

2011-05-05T15:11:00.000-04:00

We just got to my hospital room 10 minutes ago!

We arrived just before 8:00AM and saw the doctor early, but then the nurse warned us that it might be HOURS before we got a room. She suggested we hop a bus and go to the American Tobacco District! That really made me nervous about how long we were going to have to wait. It is not inconcievable that we might never get a room and have to come back tomorrow.

Lou always has good ideas. He suggested that I log on to work. That would make the hours fly by. So we headed to Starbucks for the tasty beverages and comfy seats. I worked for just over two hours. Then Lou and I went to The Commons for a liesurely lunch. (The Commons is a nicer buffet restaurant here at Duke.)

After lunch, Lou suggested that we head up tp the ward to get an idea of when I might get a room. I wasn't in love with the idea because I didn't want to make a pest of myself, but I went along with the idea because he is almost always right. Luckily, a room was being vacated at that moment, and since I was there I got bumped to the top of the list!

So now we're getting settled in and wondering when chemo will start. Everything hinges on when chemo starts on day one. It doesn't look good though. It's already so late.

I have to admit that waiting around all this time unsettled me. I had time to think about how much I do not enjoy chemo. (As if anyone does.) But I am happy to report that after I get through this Chemo Weekend, there is only one left. Then I am done.

It's Not Time Already?!

2011-05-04T09:00:00.000-04:00

Everyone, including me, is surprised that it's time already for another chemo weekend. Three weeks just flies by, especially when I am feeling good.

I am back on the old schedule: Thursday, Friday, and Saturday

This is the fifth dose. Only one more to go after this one! Yahoo!

I have my Girl Scout cookies ready. I am bringing an extra box this time for Dr R's nurse who never gets nuthin from nobody.

We have had super good luck the last couple of times, where I have gotten the first dose of chemo so early that I am out really early on the last day. Cross your fingers for me that the same thing happens this time. My appointment with Dr R is very early, 8:00AM, so I have a good chance of getting a room and getting the chemo going quick.

This time I am not bringing my fluffy pink slippers because they are just too comfy and flexy. Instead, I need my old stiff Lands End slippers so I can walk laps around the elevator tower when I am bored.

I don't expect to be bored because Carolyn and John are coming to visit me on Friday, to keep me company.

Freaky Sparse Hair

2011-04-29T08:38:00.000-04:00

About 75% of my hair fell out maybe 3 weeks after chemo started. That means about 25% is left on my head. It's a tenacious and stubborn 25%, too. It keeps growing. It remains firmly rooted. It catches the sunlight when I am outside without a hat.

And it is starting to look completely freaky!

It's long and sparse. More important, it itches under my hat! Not good. Do not want to be lifting the hat to scratch. Might give people the impression that I have fleas.

I am going to see what happens if I try to shave it myself, in the shower. Cross your fingers.

Haven't Forgotten You

2011-04-28T22:37:00.000-04:00

I haven't forgotten about you! I have just been feeling really good, and haven't have anything to blog about. I am sleeping well, and I have a lot of energy during the day.

I expect to continue feeling great right up till I go in for more chemo next Wednesday, but let's not ruin the mood by thinking about chemo.

There has been a little discomfort in my chest, but two Advil take care of it.

I have been walking more. There is now a sushi restaurant at work, but it is a bit of a hike to get to. I decided to give myself permission to have sushi any day for lunch, as long as I am willing to walk there. I should measure the distance in the car, so I can report to you how far it it.

Top Sarcoma Centers

2011-04-26T09:00:00.000-04:00

I just got email from another person with leiomyosarcoma who said that she was told the same thing, that if the metastacized tumors are in multiple systems then no surgery for you. But she said, no surgery did not mean no radiation and no RFA...

So maybe there is more out there for me beyond chemo.

Lou and I just looked at the list of "top sarcoma centers" in the US. If we go, he wants to turn it into a vacation. He is so funny. He always wants to have a good time. Imagine that.

Here is the list:

Cleveland Clinic Sarcoma

Dana Farber Cancer Center, Sarcoma page

Huntsman Cancer Institute

Mass General Hospital Cancer Center

MD Anderson Sarcoma Center

Moffitt Cancer Center Sarcoma Program

Memorial Sloan-Kettering Cancer Center, Sarcoma page

University of Michigan Cancer Center, Sarcoma Clinic

Jonsson Comprehensive Cancer Center (Los Angeles)

This is not a comprehensive list. It is just someone's opinion of "major" or "top" sarcoma centers.

Time for Walkies

2011-04-25T08:52:00.000-04:00

Sam is definitely happy with me because I have been taking her for walks a lot more often. She does this thing where she stares at me pointedly, demanding a walk. That stare is different from the one that she uses to demand a cookie. And yet different still from the offended stare that she uses to indicate that her dinner is late.

Actually, I need to make this post quickly this morning because Lou just promised Sam I would be walking her this morning before I go to work.

Today at work, there is much excitement afoot. We will be choosing our new offices! The entire group is being moved to one end of the building together. Each person will choose their new digs in order of seniority based on hiring date. I am pretty far down the list and have no hope of a window office. Oh well... there go my plans for plants.

I am not sure whether I have mentioned that I finally got on an email group for people with leiomyosarcoma. I posted an email to introduce myself, and then a week later I asked a tough question: whether there are other people who have been allowed to have surgery, even though they have tumors in multiple systems. I didn't get much of a response at all. It was a huge disappointment.

The one useful email that I received was an interesting question. A lady asked whether I have been evaluated at a "major" sarcoma center. I thought that since I was at a sarcoma center, I was doing well, but apparently there are some sarcoma centers that are just more huge and vibrant than others. So I am thinking about it.

Otherwise, I am feeling good. We had an amazing Easter dinner at our neighbor's house last night. It was a lot of fun, with great food and even better conversation. We all had assigned seating, at two tables in two different rooms, so that each couple was separated. I really enjoyed myself, but I did not have as much stamina as I expected.

Okay, got to run, er, walk now.

Migraine on Saturday

2011-04-24T09:04:00.000-04:00

Saturday morning, Lou and I were on the web looking at laptops when I noticed tiny blanks spots in my vision. "Oh no," I said, "I think I am getting a migraine!"

I wanted to wait and see what happened, because I was incredulous that a migraine would occur on a Saturday to ruin my day off. Luckily, cooler heads prevailed, and Lou suggested I take the Maxalt right away. I did, and that was the right thing to do. Because I caught it so early, it was more of an annoyance than anything serious. Sure, I had the sparkly lights and some pain, but then the headache stopped in its tracks.

We were able to go out to lunch and then do a Costco run as planned.

Later I took a nap so that on Saturday night I could visit some friends in Holly Springs.

All in all, it was a pretty nice day yesterday.

BCBS Does Not Pay For RFA

2011-04-22T08:01:00.000-04:00

Yesterday I got a policy statement from BCBS which explained that they do not pay for RFA because it is investigational. This has been their policy since 2007. It is intended, they say, for people too weak for regular surgery, and there is not enough data about the long term (4 to 5 year) benefits.

FYI, I am not too weak for surgery. My situation is that I have been told that I can't have regular surgery because I have cancer in multiple places.

I got this info because I had asked my nurse caseworker to check into it for me.

I do not even know if RFA would work for me (if my lesions meet the specific criteria) but I was so upset anyway! I had a total meltdown yesterday morning. Actually, I felt pretty good afterward. So I sent followup email to my caseworker asking for info about cryoablation, too. I wonder if that is investigational, too.

Of course I will keep my appointment with the doctor. Who knows what I will find out. I really want to know if I am a candidate for this. It is not something you can wait a couple of years to do because the tumors have to be small. If you wait too long, and the tumors grow, then it does not work.

Wandering Around London Today

2011-04-21T08:32:00.000-04:00

Lou and I would probably be looking at Egyptian antiquities in the British Museum right this minute -- if we had not cancelled the trip to Egypt!

Yesterday we would have flown to London. We would have landed this morning. Our plan was to stay awake as long as possible so we could get over the jetlag quickly. He is always better at that than I am, staying awake. We figured it would have been much betetr to wander around London half asleep than Cairo half asleep.

We would have had the opportunity for like a day and a half to see a lot of Egyptian stuff, then we would have headed over to Cairo to join the group and start the tour.

It would have been awesome!

This afternoon, I will serve myself afternoon tea as a sort of tribute to the cancelled trip. I will have to make sure I use the tea towel that is printed like the Rosetta Stone (which we bought at the British Musuem when we were in London years ago).

I guess I got over being really disappointed about this trip back in March. Maybe next year we can go.

Anyway, I have something more exciting to think about. The day before yesterday, I strongly urged a friend to stop dilly dallying and make a certain doctor's appointment. Later that day, I realized that I needed to take my own advice. Why should I wait two weeks to ask Dr. R's opinion about radiofrequency ablation (RFA)? Dr R is brilliant and awesome, but he is a chemo guy. If I want to hear about RFA, then I need to talk to an RFA guy. So yesterday I called Dr Christensen at Duke. I was looking only for an appointment, but I spoke with the doctor himself. He will review my scans to see whether my lesions meet the specific criteria for RFA. Lou and I will meet him on May 9 to hear what he thinks. (He said he also performs cryoablation, which is where he freezes the tumor, and that might be something to consider.) I am pretty excited. It might work out, and it might not. But either way, I took control of the situation and asked for what I want.

Breakfast Out

2011-04-20T09:19:00.000-04:00

I must be feeling good! Lou and I went out to Brig's for breakfast this morning. That's a benefit of waking up so early in the morning. As soon as I am done here, I am headed into the office, so I can work a half day before I crash.

A lot of strangers have been coming up to me lately to wish me luck or tell me about their beloved dead relatives. (It's almost always very sweet, and I appreciate people telling me they are going to pray for me.)

But yesterday I finally realized that if I were wearing a wig -- if I were hiding the evidence of the chemo -- then no one would be coming up to me. That might not seem like a huge breakthrough to you, but it was for me.

Wearing a hat is like advertising the chemo.

Wearing a wig is hiding the chemo.

Before this breakthrough, wearing a hat meant COMFORT and FREEDOM. Wearing a wig meant HOT and ITCHY and PUNISHMENT.

I am not putting the wig back on. but at least now I can stop wondering why all these strangers are approaching me.

Slept Better Last Night

2011-04-19T08:21:00.000-04:00

I went to bed at 9:30 last night and did not wake up till 4:15AM! It's a miracle! Then I fell back to sleep till 7:30AM, which was a second miracle. I feel okay this morning. I do not feel overwhelmed with exhaustion.

I have been surfing the web this morning, reading about RFA (radiofrequency ablation). I am going to talk to Dr R about it.

From CancerLynx: "Radiofrequency ablation (RFA) is a therapy that is gaining significant ground in the treatment of cancer. The technique involves inserting a needle under the guidance of computed tomography (CT). The needle is placed directly into the tumor. A radiofrequency is then sent through the needle. This RF energy generates heat, which destroys the tumor. There is no radiation involved, except for that from the CT scanner. Some patients can go home the same day of treatment. Most patients will be observed overnight."

Waking Up So Early

2011-04-18T10:34:00.000-04:00

Every night I wake up every few hours, and every morning at about 4:30AM I know that I just have to give up and get up. Luckily, after a few hours, I am back to sleep again.

Even more luckily, I know this will pass soon. This morning was the last dose of Decadron, so the sleeplessness ought to end soon. Maybe tonight. Definitely by tomorrow night.

I don't seem to be bouncing back as well as the last time. I am a lot more tired than before. I am good for one event or task per day. Yesterday, we went to the grocery store. Today, I have to pick up some prescriptions.

Tornado!

2011-04-17T08:34:00.000-04:00

We are fine!

The tornado passed within 6 miles of us yesterday afternoon. We didn't realize what was happening till our neighbor, Brent, phoned us, because we were watching a Star Trek Voyager DVD. But then we were glued to the news coverage of the tornado yesterday. The news was pretty intense, though. I got overwhelmed and went back to bed. When I woke up, it was all over.

Yesterday and today seem to be following the same pattern: I am up and feeling fine for awhile, I crash and sleep, then I am up again.

Happy to Wake Up at Home

2011-04-16T04:47:00.000-04:00

It's pretty early on Saturday, about 4:40AM. I am so happy to be home.

My nurses rushed to get me out as early as possible yesterday. The last dose of chemo was started at 7:00AM, right at shift change. Amazing. It went well. No nausea.

Doane picked up up around 2:45PM. She was lurking in the area and pulled up just as we walked out of the hospital's front doors. Can't ask for better than that! On the way home we picked up a prescription. Looks like I might have a urinary track infection this time, so I taking taking something. I can't drink milk within 2 hours of taking this prescription, though, which is tricky for me because I love milk.

Anyway, yesterday I puttered around groggily, mostly just hanging up clothes that are waiting to be ironed. Then we watched Start Trek Nenesis on our new Sony Blu Ray DVD player. Guess I am not the only one who shops online during Chemo Weekends.

It is supposed to downpour later with thunder and lightening. Perfect weather for a TV marathon. Till then, I think I might iron. Or I might put away all the cookbooks in the new cabinets in the laundry room. Does that sound strange? It's right off the kitchen. We have never found a good place for these cookbooks in this house. They have been living in my office, and thus are never consulted.

Today (Friday early)

2011-04-15T05:02:00.001-04:00

Today started really really early. The Ambien did not keep me asleep. I slept good from 9:00PM to 2:00AM, but then I dozed lightly till 4:30 when I finally gave up and got up.

I have walked six laps around the tower wearing a new knitted cap I got from a box of hats being given to patients. I also gave a urine sample, and I am waiting to get my port Saran wrapped so I can take a shower. I walked by another patient's room, and saw that he has Tim Allen's Tootltime sitcom on, so now I'm watching too.

My plan is Starbucks at 6:00 and chemo at 7:00 and home at 2:00.

Oh golly someone down the hall is groaning pretty loudly all of a sudden.

Today (Thursday late)

2011-04-14T18:33:00.001-04:00

Today went really well, too. I was awake at 4:30 but I didn't get up till 5:30. Sloth! Laziness!

I took a shower and went to Starbucks at 6:01AM and got in line with six people already ahead of me. The place has been open for one minute!

Then I did six laps around the tower. Not sure what that translates to.

I watched an old movie, Clockwatchers, today, which was interesting but a bit of a downer. I tried to read my awesome book, The Watchman, but it was too difficult to focus.

I slept a lot. Meredyth visited in mid-afternoon and cheered me up and cheered me on. We talked a little bit about work. After she left, I zonked out with a power nap. When I woke up, I was awake and alert and feeling great.

I went for a walk and sat outside in a garden in the fresh air for awhile.

At this point, I have eaten dinner, and my plan is to watch another old movie, Nine to Five, this evening.

Lou comes back early tomorrow morning. Woo hoo! The plan is for chemo at 8:30AM and discharged at 3:00PM with fabulous Doane driving us home. But that's tomorrow.

Yesterday

2011-04-14T08:12:00.000-04:00

Yesterday went really well. We got in a room before noon, and I had one of my favorite nurses.

Chemo started at 4:20PM, which was completely amazingly early. This means chemo on Thursday will be at 12:20, and then chemo on Friday will be at 8:20AM and I will be heading home around 4:30 on Friday. Awesome not to have to stay at the hotel next door.

I handed over my Girl Scout as usual.

I was really sleepy yesterday and dozed a lot. Mo dropped by and entertained us with dog competiyion stories and news from the old neighbor hood, then he took Lou home at 5:00PM. After that, I slept a lot.

Fun size York Peppermint Patties are totally working to keep the nasty taste away when they flush my port. Much better than other things I have tried. Amelia had mentioned that poppermint was anti-nausea for many people...

When I was in the elevator with Lou at some point, coming back from Starbucks probably, a lady started talking to me about chemo. She is a cancer survivor. It was nice, like, I am part of a huge community of cancer survivors.

After she left, we decided that there are three camps of people who talk to me:

the first camp is like that lady in the elevator. The the message is "I am still Alive!"
the second camp is someone who was a caretaker and basically tells me about everyone they know who dies from cancer, sort of once the floodgates open they can't stop. The message is "Cancer is not easy." or "Just seeing your bald head brought all my pain back up for me!"
the third camp is someone who just tells me that they have noticed me and are praying for me. The message is "You are loved."

All three are fine. All three mean well.

doc calls it mixed results

2011-04-13T11:35:00.001-04:00

Dr R says the scan shows mixed results, but I think they are pretty good.

We looked at 7 tumors, comparing my newbscan to the previous scan. Two tumors shrank. Four stayed the same. One little bastard grew.

The two that shrank are located at two of the three spots where I had pain, so that explains the pain going away. Strangely, the one that grew is located at the third spot where I had pain but which only gives an occasional weak signal. Not sure what to think.

We are going ahead with the chemo as planned.

Lou and I are sitting in Admitting, waiting for my room.

I am reading a new book. Robert Crais's The Watchman. Excellent.

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Sent from my Verizon Wireless mobile phone

Two Hours to Results

2011-04-13T07:36:00.000-04:00

Start the countdown: there are two hours left before I get my results!

Right now Lou is calling me, because it's time to take a shower and get dressed. I have less than 30 minutes before I have to be outside to jump in John's car for the drive to Duke. I don't want to keep John waiting.

Last night, John, Lou and I went to Genki for pre-chemo sushi. It was awesome! Mine was cooked, mostly.

I am feeling pretty darned good.

Scan Day Today

2011-04-12T08:34:00.000-04:00

I am mildly excited about scan day today.

Finally, science will either verify or refute my gut-level opinion that this chemo is shrinking the tumors.

Why am I so sure it's working? Before the chemo started, I was in pain. Before the second dose, that pain was gone. How can I help but think that the chemo is working?

However, I am only mildly excited (not wildly excited) because I just don't want to get my hopes up too high, in case of disappointment. I don't want to set myself up to fall off the Cliff of Despair because then I would just have to climb back up that rocky cliff face and pull myself back up onto the Plateau of Cheerful Determination, which is surrounded by the Mountains of Contentment.

So I am saving my wild excitement and my happy dance for after the results.

CT Scan is scheduled for 2:30PM today.

Results are scheduled for 9:30AM tomorrow.

I'll probably go for Chemo Weekend Four on Wednesday, Thursday, and Friday of this week. Meredyth said she would visit me on Thursday, and I have movies and books to entertain me.

Occasional and Transcient Side Effects

2011-04-07T08:40:00.000-04:00

There are a couple of side effects that I don't talk about much because I really do not like them.

Luckily, they are both occasional and transcient. (Thank God they only happen every now and then, and do not last long, or they would drive me and everyone around me insane.)

So what are they? Difficulty speaking and a lack of emotional control.

Yesterday was a case in point. I have been waiting for months for laundry room cabinets, and finally yesterday they were professionally installed. At first, everything looked perfect. But in the evening, while I was dusting them and adjusting the shelves, I saw a few flaws and a little damage. I became upset, way out of proportion, and overwhelmed with feelings that the entire job was a fiasco and that the cabinets were crap and that nothing is ever as nice as it ought to be.

Then poor Lou wandered in and innocently asked how things were going. When I tried to explain it, I had a really hard time describing the damage to Lou.

The interesting part is that when I sent email to the salesman (who had sent email asking how the install went), I had no difficulty at all making a calm and reasonable list of problems and suggested solutions. It's like, the difficulty in communication applies only to verbal communication.

Anyway, my upset feelings soon passed. Now I am just calmly waiting to hear back from the salesman to see what we can do to fix the damage. And I love the cabinets anyway.

__________

Maybe you are thinking about how Ifosfamide can cause neurologic toxicity and delusions, and you are worried that that is what is happening but I don't realize it. Thanks for worrying about me, but I do not think it is that. There are no rabbits hiding in the new cabinets. And I have had these same two side effects every time I have gotten chemo, in varying degrees of seriousness.

Went for a Walk

2011-04-06T14:12:00.000-04:00

Today is absolutely beautiful: about 70 degrees, sunny, and breezy. Lou and I went out to lunch and then walked to the gate together.

I have not been walking at all, and it is about time I started again. My friend Jean in England with the same cancer is not walking any more at all because of cancer on her tailbone. Reading her blog made me realize how lucky I am that I can still walk. I owe it to myself to get out there.

Today I huffed and puffed up the hills. I didn't used to huff and puff, back when I was walking all the time. It's just a matter of getting back into shape.

This time of year, everyone is sprucing up their yards, and there is a lot to admire. In out yard, we are planning to move some huge bushes out of a flower bed, and I am looking fro smaller bushes to put in their place.

Well, got to get back to work!

Summer Day

2011-04-04T08:54:00.000-04:00

Today will be a lovely summer day here in the Raleigh area! It will be 83 degrees and sunny and windy.

I am going to blog quickly so I can get Sam out for a quick walk before I go to work.

What's my status?

I am sleeping great! And I wake up feeling really good.

There are a few trouble spots on my scalp. And what little hair I have left continues to grow, which looks very freaky.

I have had a few occasions of minor discomfort in my chest area, but they are mild and fleeting. When they happen, I think of what my friend Meredyth suggested: that a tumor is thrashing about in pain as the chemo overwhelms it.

I am still very sensitive to smell. Some strong smells make me feel nauseated, but then it goes away immediately if I get away from the smell. For example, a very good friend gave me a tube of passionfruit lotion, and I loved it at first, but now just a whiff makes my stomach roil.

Saturday was tough on Lou. I felt great and energetic, but I had a hard time remembering anything. For example, we planned what we would do early on Saturday; then an hour later, I suggested something completely different because I had forgotten about the plan. Or, while we were on our walk, I kept asking the same question over and over because the answer had already flown out of my head. Yikes! But that went away by Sunday.

Feeling Great

2011-04-02T09:05:00.001-04:00

Yesterday, I worked for six hours, and I was not completely exhausted at any time. Mid-morning, I did have a hard time understanding something very complicated that someone was trying to explain to me, but I eventually got it when she broke it down to baby steps. I think I probably would have struggled with it, chemo or no chemo!

Today we have a busy day planned. We are watching a movie, running errands, and seeing Carol Burnett tonight at the DPAC. Oh and we are finally going to try the Mexican restaurant Dos Peros (two dogs) near the DPAC.

I can hear Lou calling me from the living room. The movie is cue'ed up and he's gonna start without me...

Asparagus Cure

2011-04-01T08:49:00.000-04:00

I just got email that explains if I take a teaspoon of pureed canned asparagus (in hot or cold water) every day, all my cancer of any type will completely disappear.

Wow!

I just wish I had gotten that email a little sooner. I could have avoided all this boring chemo.

April Fool's Day...

or maybe Asparagus Fool's Day!

I am feeling really good. I went to the office yesterday, worked for four hours, then really crashed with total exhaustioon. But today I am feeling as though I could work a full day... We'll see.

The best part of today will be a Baby Shower at work for an awesome coworker. Ooh, plus dinner out at the most fabulous La Piazza in Garner with Nick and Sharon.

Nausea!

2011-03-30T07:46:00.000-04:00

Out of the blue late on Tuesday, I got nauseated. (Till then, I had not been nauseated since Friday, which was amazing and wonderful.)

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.

Exhausted

2011-03-29T08:40:00.000-04:00

On Monday, for most of the day, I was completely useless. The good news was that although I was completely exhausted, I was not nauseated. I'll take exhaustion over nausea any day of the week!

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.