Thursday, April 29, 2010

Is It Time Yet?

Yesterday we drove to Chimney Rock State Park. The elevator to the top of the Chimney Rock was not functioning, so we walked up the stairs (315 feet height) to the observation "deck." It was awesome!  We did have to stop numerous times to let me catch my breath, but that just meant more time to enjoy the scenery on the way up. I was glad that the elevator was broken because otherwise we would have missed all that fun.

The elevator was working when it was time to go down, which was nice.

Then we did the Hickory Nut Falls Trail (1.5 mile round trip). That was fun too, very pretty.  There was a huge group of teenagers from Florida swimming in the water at the Falls.

Well, it was a great day, but at 9:00PM we were both completely exhausted and ready to fall asleep. But I had to stay awake till 10:30PM to take my pills!  Argh!  Lou set his cell phone alarm for me and fell asleep. I read for what seemed like a million years, then I got up to check the time because I was worried that his alarm maybe had not gone off. But it was only 10:08PM. Twenty-two minutes to go... went back to reading The Full Cupboard of Life, an Alexander McCall Smith book. When the alarm finally went off, I happily took the pills and went right to sleep.

Monday, April 26, 2010

Do We Have Everything?

The plan was for us to leave the house at 10:00AM to head to Biltmore for our vacation.

After the car was all packed with luggage and cooler and books, Lou suggested we sit for a minute and do a mental inventory. I ran through everything that I had packed and felt pretty complete.

Then Lou suggested we give Samantha the bone leftover from Lou's 22 ounce "cowboy" ribeye steak from Ruth's Chris Steakhouse, so I went into the fridge to get the meaty bone. Lou lured Sam outside, leaving me standing in front of the open fridge, fretting about whether I ought to throw away the leftover rice, chicken, and beans in there. Then I glanced one shelf up and saw my stack of clinical trial drug folders -- and realized with a start that I had not packed my drugs for the week!

That would have been awful, to have gotten all the way to Biltmore only to have to turn around and come home again. (I would have come home, too. I wouldn't want to miss even one dose.)

So I threw a folder of drugs (each week's supply of pills comes in its own folder) into the cooler.  Soon after that, we hit the road for a lovely four-hour drive.

We're listening to Dean Koontz's The Good Guy on Lou's MP3 player and really enjoying it. This one is particuly funny (and scary). We laughed out loud a bunch of times.

We got to the Inn on Biltmore Estate just after 3:00PM. Our high tea reservation was for 3:30PM.  Gosh I love high tea. Lou was a good sport and drank a freaky strong tea blended with chilies and chocolate, followed by a couple of cocktails ;^)  I stuck with a black tea, with hints of fruit.  Everything was wonderful, especially our waitress.  The scones were cherry and chocolate.

Just when we were contemplating our last few pastries, the fire alarm went off and we were gently herded outside. Luckily, we got a good spot under the portico because it was drizzling and windy.

Aferward we walked down the hill to see the Antler Hill Village (winery, shops, pub, farm). Here I am with the inn behind me.

Tomorrow we're supposed to have a thunderstorm and rain all day. We plan to tour the Biltmore House tomorrow. We have an audio tour. We saw that there is also a Behind the Scenes tour as well as a Rooftop tour!  If it is raining, we'll save the gardens for later in the week (Wednesday and Thursday are 'sposed to be sunny.)

I am feeling great, not tired at all.  My only complaint would be that my ankles and feet are swollen, itchy, and numb all at the same time. How can they be both itchy and numb?! It's just wrong.

Wednesday, April 21, 2010

Don't Drink That!

I got email yesterday from Ann-Marie (one of my clinical trial nurses) informing me that I do NOT need to drink the oral contrast when I go for my next CT Scan!

That is great news, because it tastes like orange-flavored bathroom cleaner.

And you have to sit around for an hour afterward before they can scan you, so it makes the day drag.

The funny thing is, Ann-Marie added, "If they try to make you drink it, just refuse and have them call me." That's funny because I had to argue with them to get them to give it to me last time. Nothing like having to argue for something that you really really do not want.

Friday, April 16, 2010

Nothing To Worry About

Dr Reidel called me this morning. I was sort of horrified to hear his voice because he sounded very serious and all I could think was that he had bad news for me.

But he was calling to report that he already showed my MRI to the musculoskeletal radiologist guys for a second review. They said that there is nothing to worry about. The lesion on the ilium does not look like cancer. It might be "red marrow." More importantly, that lesion can be seen in the mid-October MRI, so it is not new.

So there is no reason to take me off the study drug!  (Thank God.)

Gosh, there is a lot in that mid-October MRI that I never heard about. I was wondering how there could be som much in the mid-October MRI that I never heard about. But if I think back, I was in a lot of pain and really worried. So when the report said that the tumor in the psoas shrank significantly and that there was a bulging disc, I guess we were all so relieved that no one bothered to read the rest of the report.

Here's what I am thinking:  all these reports get posted to the Duke web site for me to view, and I think that I should start reading them. After all, it's my health we are talking about.

Thursday, April 15, 2010

Early Results versus Final Results

I'll tell ya, there is almost no traffic on highway 40 at 5:30AM. Lou and I practically flew up to Durham for my 6:30AM checkin for the MRI. Jane (our GPS) got us to the Lenox Baker Children's hospital with no trouble.

It was still dark, but I saw signs that said "MRI" and pointed off to the left. We followed the signs to what turned out to be a stockade fence surrounding six or seven of those big medical trailers that each houses its own MRI machine. We headed over to the gate marked "MRI Registration" but it was locked! I peered through the wooden slats and could see a walkway leading to another trailer in the back. I had to assume that we were in the right place.

We stood around for 15 minutes. Right at 6:30AM, another car came into the parking lot. It was a lady with the key to the gate. She let us in and let us hang in the waiting room while she opened up the office.

It would have been nice if the Duke computer that told me to check in at 6:30AM had mentioned that the office would not open till 6:30AM. Maybe I would not have gone 80MPH if I knew we would have to stand around in the dark parking lot listening to birds (which was actually quite pleasant).

The scan itself went really well. My scan guy was funny and personable. There were a lost of scans, and then they gave me contrast through my fabulous Bard Power Port, and then more scans followed. I am glad I am not claustrophobic because I was squished in the MRI tube for awhile.

Lou and I drove over to the Duke Clinics and got coffee at the Seattle's Best in the food court. There were Tim's Cascade potato chips for sale! We didn't buy any. It was just so cool to see them. We have not seen them since we left Seattle.

We saw Dr Reidel at about 9:30AM, and he had only the most preliminary of results to give me. First, though, he wanted to hear why we had this scan, so I told him about how Dr Morris was insistent that I get a scan to see why part of my leg is numb.

The early results were that the tumor in the psoas looks exactly the same as it did in mid-October. Yahoo!

The final results would probably not be available till Thursday, and Dr R has a whopping 32 patients to see on Thursday, so I was not going to get the results till Friday. That was cool with me. I felt bad for him, having to see 32 people in one day (his usual is 20 to 22 max). He was really funny, saying that everyone would be mad at him because he was going to be way behind schedule and have little time to spend with each person.

Lou and I left feeling pretty good. I am totally okay with the idea that there is some nerve damage from the radiation, because that is so much nicer than hearing that the tumor grew or the bone started to fragment or something equally horrible.

I dropped Lou at home, and I went to the office.

Late in the afternoon, I was making good progress on a tricky problem at work when my phone rang. It was Dr R calling with the final results. I took notes. There is nothing horrendous, but it is not all good news.

  • The tumor in the psoas is indeed the same size. That is great news.

  • The psoas muscle on the left is much smaller. That is not so great news.

  • Something (I think the shrunken psoas) has narrowed the exit of the nerve, which probably means the nerve is being compressed, and which is probably causing the numb area on my leg. That is okay news.

  • I do not have one bulging disc -- I have three bulging discs. That's probably causing my lower back discomfort. 

  • The lesion on L5 is the same size as it was in mid-October. Are you thinking, "What lesion on L5?!" That is exactly what I was thinking. Apparently there is a small lesion on L5 that was there in mid-October. I don't remember hearing about it. Dr R did not remember hearing about it either. Darn, I guess my tumor count is nine, not eight.

  • There is a new 9 millimeter lesion on the right ilium bone (see illustration below). The lesion is non-enhancing (did not glow from contrast like the tumor in the psoas). No one knows what this thing is. Dr R is going to present it to a group of musculoskeletal specialists at a conference on Tuesday and see what they think. I might need a bone scan, which is no big deal. If it does not glow on the bone scan, then we can ignore it.

I will be waiting to hear what the conference on Tuesday thinks.

And I think that I will try physical therapy again. It "failed" last time because we were trying to make the numbness go way. I think our new goals will be to beef up the psoas muscle and un-bulge the three discs.

Tuesday, April 13, 2010

Wicked Early Day Tomorrow

I got one of those automated phone calls from Duke where a computer talks to you about your appointment. The computer wants me to check in for my MRI at 6:30AM. Yikes. That is one early appointment!

Lou and I will probably leave the house at 5:30AM (or a little earlier) to give ourselves time to get to Durham and find this place. It is a children's Hospital about a mile away from the Duke Clinics, where I usually go. (Yesterday afternoon I used mapquest and zoomed right close in the satelite photo.)

We're going to McDonalds for breakfast on the way. That is the one bright spot in the plan.

Speaking of healthy eating ;^) I am thrilled to report that I continue to lose weight. Being diabetic sure makes it easy to follow a food plan! Actually, it would probably be very difficult and annoying if I did not have the fabulous side effect of decreased appetite from the clinical trial drug. (It is so wonderful to not think about food all day long. I think that Ariad needs to look into re-purposing this drug for weightloss. Well, maybe not. I'm not sure that anyone would be so in love with the drug if it weren't keeping their cancer from growing.)

Wednesday, April 7, 2010

Got the MRI Appointment Already

Duke is awesome!

When I logged on this morning to check email and blogify, I saw that I had email from Duke with my MRI appointment. Plus, someone just phoned me to confirm.

The MRI is next Wednesday at 7:00AM. Then I see Dr Riedel at 9:30AM for the results.

I'm going to ask Lou to come with me.

There is nothing as difficult as having to WAIT for the results of a scan. (My brain just goes into overdrive manufacturing various worst-case scenarios.) So I love that Duke always schedules an appointment right after a scan to give me the results.

What's the MRI for? Looking for a reason for the numbness and pain in my left leg. To quote Dr Morris, it might be tumor-related, or treatment-related (radiation side effects), or totally unrelated.

I just hope that whatever it is, it does not result in me getting kicked off the clinical trial. If you are a praying person, that might be a good thing to pray for ;^)

Tuesday, April 6, 2010

Duke Wins!

We went to bed last last before the game ended. This morning Lou replayed the final couple of minutes from the game. Duke wins! 2010 NCAA Champions!

You won't see it on the news but Duke also won yesterday in a skirmish over my MRI. I gave up waiting for UNC to call back to make my MRI appointment.

I called Caroline, one of my clinical trial nurses at Duke. I told her the story. [The story is that in February, at a checkup with my radiation oncologist at UNC, Dr M said if the numbness and pain in my left leg did not go away quickly with PT then I needed to have an MRI to see what is going on. (For example, there might be some nerve damage from the radiation.) PT did not work, so I dilly-dallied and then finally called for the MRI at UNC -- but after a week and a half, no one has called me back.]

Caroline called me back to say that Dr R agreed that an MRI was a good idea, and someone is supposed to call me today to set up the MRI appointment and a followup to discuss the results a week later.

I had a little bit of a meltdown yesterday evening worrying about this MRI and whatever it is that is causing the pain and numbness. But I felt much better this morning. It is better to know. Maybe something can be done.

Sunday, April 4, 2010


Lou and I just watched an action movie where the first few scenes are at Santorini, Greece. It was absolutely beautiful -- until a small earthquake and then guys with guns showed up...

Why am I telling you this? Lou and I just booked a cruise to the Greek Isles on Princess for this September! And Santorini is one of our stops.

I have wanted to do the Greek Isles for years, but other vacations and then the cancer got in the way. Nothings going to stop us now. [knock on wood]

September is just around the corner. We will just have celebrated our 18th wedding anniversary, too, so it will be super special.

And just last night Doane offered to give me a beach cover up. Coincidence? I think not!

Saturday, April 3, 2010

Super Itchy

One of the questions the clinical trial nurse asks at every checkup is whether I am itchy. I have been mildly itchy all along, but lately I have been super itchy.

It's my calves. I have been waking up at night with super itchy calves. I scratch and it feels wonderful, but the itch is never satisfied because as soon as I stop scratching, the itchiness returns.

Good thing my fingernails are ridiculously short (they are thin and chip and peel very easily) because I could do some serious damage with the scratching.

This morning I gave up trying to sleep at 6:30AM (on a Saturday!) because of the itchiness.

Then I remembered my friend Carol who suffers from itchiness and who uses ice bags to make it stop. So I got some ice and settled into my LazyBoy and rubbed the ice on my legs. It worked! The itchiness went away. (Right now my calves are just a little itchy, not itchy enough to make me start scratching.

Lou and I had breakfast and walked Sam and are looking forward to maybe watching a movie.