Saturday, December 31, 2011

2011 Quick Updates

I'm not doing quick updates any more.  But here they are from 2011.


November 8, 2011 Tonight I will hang out with Lou on the couch.
November 7, 2011 Only one month till my Dad's birthday. This year is flying by.

November 6, 2011 Don't forget to change your clocks.

November 5, 2011 Ooh, Saturday, let's have some fun.

November 4, 2011 Thank God it's Friday

October 31, 2011 Happy Halloween! We had 45 trick-or-treaters this year (versus 60 in 2009)


October 29, 2011 Rainy Saturday

October 25, 2011 I have been away so long, it is good to be back.

Friday the Thirteenth!

May 11, 2011 I hope I can work a half day today -- in between naps!

May 10, 2011 Another partly rainy day, good for napping.

May 9, 2011 Big day today

May 8, 2011 Home at last! Quiet rainy Sunday, good for rest and recuperation.

Thursday through Saturday, I am staying at Duke University Hospital for Chemo Weekend 5.

5-4-2011 Rainy and cool today... I have lunch plans and dinner plans! Crazy. We always try to have sushi for dinner the night before chemo.

4-29-2011 Thank God It's Friday

4-26-2011 Lou said that I snored all last night. Luckily, all that noise didn't bother me at all

4-21-2011 Slept so great that Lou actually had to come wake me up! I guess I am back to normal.

4-20-2011 Going to be a hot day today in Raleigh.

4-19-2011 No Decadron today!

4-18-2011 Tax Day!

4-17-2011 Another quiet day at home recovering. I think we are going to make a trip to the grocery store later.

Wednesday through Friday: I am at Duke Univ Hospital for "Chemo Weekend 4"

4-12-2011 Wow, I took four days off from blogging.

4-8-2011 My allergies are acting up, which is no wonder since everything is coated with pollen these days.

4-7-2011 Another beautiful day today! I am going to walk Sam before I go to work.

4-6-2011 Today cabinets finally get installed in my laundry room. I am pretty excited.

4-4-2011 Slept great again! I am getting spoiled.

4-3-2011 Lou helped me rearrange my office, and he gave me the TV from the mancave! I really want Google TV after seeing it at Best Buy.

4-2-2011 I have been sleeping great, not waking up even once in the night. Now that is a good night's sleep.

4-1-2011 Watch out today! It's April Fool's Day!

March 30, 2011 Knock on wood. Right now I feel fine.

Tuesday March 29, 2011 I am still waking up a million times per night, but this morning I felt less exhausted than yesterday.

Sunday March 27, 2011 Home! And it's my birthday! Yahoo!

Thursday through Saturday March 26, 2011 I am at Duke getting chemo... but Lou is home with Samantha if you want to phone him.

March 23, 2011 Must be allergies giving me a sore throat. Pollen is everywhere!

March 21, 2011 So awesome to be home! Slept great. Today, I go to work but Lou stays on vacation for one more day.

March 19, 2011 We are in beautiful Altantic Beach, NC, for the weekend.

Happy St. Patrick's Day!

March 15, 2011 Today Lou is fine. I think that it was allergies bothering him on Sunday. Spring seems to be here, based on how often I am blowing my nose.

March 13, 2011 Lou is not feeling well, so here is my chance to take care of him for once.

March 11, 2011 I have been sleeping so well. Everything is better all day after a good night's sleep.

March 10, 2011 Slept till 7:30AM! What a miracle!

March 9, 2011 Again I woke up at 4:00AM, wide awake, no nausea. Yesterday went downhill fast. Hoping that today stays good.

March 7, 2011 Woke up at 4:00AM, wide awake, no nausea.

March 3 to 5, 2011 I'm at Duke for second cycle of chemo. If you want to visit, text me and I'll give ya my room number. Looks like I'll be here till 9:00PM Saturday.

March 3, 2011 Woke up early again. Robert is picking us up at 9:00AM, and then Ifosfamide Adventure 2 begins.

March 1, 2011 Welcome to March! I woke up really early this morning. I could not fall back to sleep, but I am dragging. Maybe more tea will help...

2-26-2011 Today we go see In The Heights at the DPAC! I am feeling good. I stayed up wicked late last night, hanging out with the girls. Fun

2-25-2011 I have a bounce in my step today

2-24-2011 Yikes! Slept till 8:30, and now I need to start moving if I am going to get to the office in time for my 10:00 meeting! No time to post anything... but I do feel pretty good today.

2-23-2011 Woke up feeling good at 7:28AM.

2-22-2011 6:00AM comes mighty early. I am up and on my way to my checkup.

2-21-2011 I feel pretty good right now. I have a long day ahead of me and hope to do everything I have planned, but if I have to bail out, then I bail out.

2-20-2011 The decadron must be out of my system because last night I slept great all night long!

2-19-2011 I guess three Advil work because I woke up feeling pretty good this morning.

2-18-2011 Another restless night, another early morning.

2-17-2011 Woke up several times in the night, but it is great to be home in my own bed.

Saturday through Tuesday I am at Duke undergoing my first ifosfamide treatment.

2-12-2011 Running around getting ready to leave for Duke...

2-11-2011 I couldn't sleep at all last night. I felt awful. So I got up and watched all the Mentalist episodes on my Tivo. This morning I have no pain, but I am wiped out

2-10-2011 I slept great last night. I guess I was pretty wiped out. I did take some Advil before going to bed to take away the discomfort in my lungs.

Wednesday 2-9-2011 I'm hanging in there.

Tuesday 2-8-2011 Lou and I finally watched the movie about Facebook tonight. It was great.

Monday 2-7-2011 Did not turn on my alarm clock, so I slept till 9:00AM. Feeling pretty good today, and really looking forward to this scan.

Sunday 2-6-2011 Super Bowl Sunday! Lou is doing all the work to get ready for the party. Go Packers!

Wednesday 2-2-2011 I had to get up really early today because we had dentist appointments. When the lady asked me if anything in my medical record had changed since my last visit, I was so glad to report that I am not getting chemo and I am not diabetic.

Monday 1-31-2011 Feeling pretty good this morning. Samantha is watching me pretty closely, to make sure that I walk her before I go to work.

Saturday 1-29-2011 Slept great, woke up early, and then watched the third Dirty Harry movie this morning with Lou. It is much harder than I thought to take a picture of myself with my cell phone, so we have to wait for Lou to take a picture of my new hair and glassess.

Thursday 1-27-2011 Woke up super early so I could log on to work and run some processes before everyone else logged on and made the system slow... Woke up in the middle of the night thinking that the house was on fire. I jumped out of bed and started yelling. Poor Lou. That man is going to have a heart attack one night.

Wednesday, December 28, 2011

Physical Therapy

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.

Saturday, December 24, 2011

Christmas Miracle

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.

Wednesday, December 21, 2011

I Need Some Sleep

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.

Monday, December 19, 2011

Bedroom Difficulties

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!

Sunday, December 18, 2011

Christmas Surprise!

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.

Friday, December 16, 2011

Like a Guest in My Own House

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.

Sunday, December 11, 2011

Let's Hope THAT Never Happens Again!

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.

Saturday, December 10, 2011

Again With the Early Wake-Up Call

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.

Friday, December 9, 2011

Repeat Performance

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

Tuesday, December 6, 2011

Attack Dog!

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)


Sent from my Verizon Wireless Phone

Sunday, December 4, 2011

How Is It Going?

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.

Friday, December 2, 2011

Four Gray Pills

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.

Wednesday, November 30, 2011

Starting Chemo Tonight

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.

Tuesday, November 29, 2011

Barfed

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

Monday, November 28, 2011

MRI Today

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

Sunday, November 27, 2011

Thanksgiving Weekend Ends

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.

Tuesday, November 22, 2011

Drugs to Arrive on Monday!

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

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.

Friday, November 18, 2011

Fabulous Genmai Cha Tea

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.

Tuesday, November 15, 2011

I Have Been Approved!

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
HAPPY DANCE
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.

Monday, November 14, 2011

Sticker Shock

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.

Sunday, November 13, 2011

Wicked Bummah

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.

Friday, November 11, 2011

What Day Is It?

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.

Thursday, November 10, 2011

Monstrous Distractions

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!

Tuesday, November 8, 2011

All This Attention

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!

Monday, November 7, 2011

Still Feel Great

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.

Sunday, November 6, 2011

Fall Back

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.

Saturday, November 5, 2011

Roadblock

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?!"

Friday, November 4, 2011

Tongue Twister

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.

Thursday, November 3, 2011

Time for More Chemo


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

Wednesday, November 2, 2011

Oblivious to What's Happening in Front of Me

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.

Monday, October 31, 2011

Happy Halloween


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.

Saturday, October 29, 2011

Foolish Optimism

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...

Wednesday, October 26, 2011

Bumped

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.

Wednesday, August 31, 2011

Tummy Aches Finally Gone

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!

Friday, August 26, 2011

Fresca for Sale

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.

Thursday, August 25, 2011

Great News: Stable Disease


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


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

Do I Remember How to Blog from My Phone?

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

Wednesday, August 24, 2011

Scan Day is EZ

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.

Tuesday, August 23, 2011

Genetically Engineer Me Now

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.

Saturday, August 20, 2011

Test My Calm

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.

Thursday, August 18, 2011

They Postponed Me

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.

Thursday, June 16, 2011

Good News

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!

Wednesday, June 15, 2011

Strangely Calm on Scan Day

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.

Friday, June 3, 2011

Restless Legs

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.

Sunday, May 29, 2011

Home Sweet Home

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

Saturday, May 28, 2011

Almost Ready To Go

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

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

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...

Friday, May 27, 2011

What a Fun Afternoon

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

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!

Thursday, May 26, 2011

First Dose Done

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

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

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.

Monday, May 16, 2011

Got No Complaints

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.

Friday, May 13, 2011

Three Migraines in Two Days

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.)

Thursday, May 12, 2011

Migraines Wednesday and Thursday Morning

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.

Wednesday, May 11, 2011

Is That My Phone Ringing?

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!

Tuesday, May 10, 2011

Good News

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.