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.


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!


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.


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.