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


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.


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!)


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.


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


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.