Wednesday, March 31, 2010

No Soup For You!

Last night I walked into the house just as Lou was serving dinner: chicken piccata, brown rice, and asparagus. The house smelled wonderful, and the food tasted as good as it smelled. There is nothing so nice as coming home to dinner on the table.

I estimated that I had two carbs for dinner (2/3 cup of rice). That meant that I could have a Jello pudding cup for dessert. We both have our own sugar free, fat free, Jello pudding cups. Mine are milk chocolate and Lou's are dark chocolate.

But before dessert, Lou suggested we take Miss Samantha for a walk because it was such a beautiful evening. We did the usual loop and then we kept walking out toward the gate to the neighborhood. It is exactly one mile from our house to the gate.

Sam did her business, and I bagged it -- and then Lou suggested that, instead of taking it home, I ought to dump it in one of the dog trash stations that are located around the neighborhood. The closest one was almost all the way to the gate! Poor Sam was dragging all four feet, so I skipped ahead to the dog station and then rejoined Sam and Lou. Now my feet were dragging too.

We turned around to go home. Time for pudding! But when I looked at my watch, I saw that it was already 7:45PM. My food cut off time is 7:30PM, so I can take the clinical trial pills at 9:30PM.  Argh!  No pudding for me!

We laughed about that all the way home.

Monday, March 29, 2010

Birthday Lunch With Pat and John

I chose German food (not sushi) for my birthday lunch on Saturday, and Lou invited our closest neighbors Pat and John to come with us to the Bavarian Brathaus of Cary (on Tryon Road). What a great restaurant! We had a wonderful time.  The food was excellent, and the conversation was even better.

Pat and John gave me a lovely cutting board made by a Native American artist, Ken Smith.  Pat took pictures, which came out really well even though it was a little dark in the restaurant.

Our waiter somehow knew that it was my birthday and brought over a large musical machine that required cranking -- but the machine emitted only a few forlorn moans no matter how much he cranked and fiddled with the settings. Our waiter's struggles and eventual defeat were probably more entertaining than the music would have been.

Friday, March 26, 2010

Karen Turns 45 Tomorrow

Tomorrow is my birthday!  I'll be 45.

I am happy to be turning 45 and just hope that I get to get older and older and older!

So far the plan is for a massage first thing on Saturday, and then lunch out with my sweet husband. I still have not chosen between sushi and German food...

It is funny to be 45. Most of the time I feel as though I am 25, although there have been some days this year when I felt like I was 85 ;^)

Thursday, March 25, 2010

Left a Message

Yesterday I finally called Dr Morris!

I talked to the receptionist, who took the message. Dr Morris's nurse was out yesterday, so she'll get the message some time today. Then she'll talk to Dr Morris.  Then finally someone will phone me to make the MRI appointment.

I feel as though I have a little reprieve while messages are passed back and forth  ;^)

Monday, March 22, 2010

Physical Therapy Did Not Solve the Problem

When I saw Dr Morris for my recent post-radiation checkup, I was having some pain and numbness in my left leg, and some pain in my lower back. He was concerned about it and suggested that we have an MRI to see what's going on. But I was completely unconcerned because I had had similar pain at the end of 2009, and that physical therapy took care of it very quickly.  He said that if PT did not take care of it this time, I should let him know because I ought to have an MRI.

I have been going to PT for a few weeks now. The pain is almost all gone, but the numbness persists. Last week, I suggested to my physical therapist that maybe this time PT was not working. She has been trying lots of things to get the numb area to go away, to no avail.  She agreed that I ought to call Dr Morris back.

That was on Thursday morning, and I still have not called yet. 

I just hesitate to open what could be a can of worms.  I keep thinking that whatever he finds, there is not going to be any kind of pleasant solution. What is the chance that a strict regimen of eating ice cream and watching movies is going to be his recommendation? Nil!

But, I am not the doctor. So I guess I will call today.

Thursday, March 18, 2010

No More Metformin!

Today I talked to Kathleen, who is the nurse for my fabulous primary care physician.

I gave her my recent blood sugar numbers and said I was still pretty nauseated by the Metformin. I told her that my oncologist was not happy that my blood sugar numbers had not improved.

A couple of hours later, she called back with the excellent news that I am to STOP taking the Metformin and switch to Glyburide instead.

Yahoo, happy dance, no more nausea!

Update on the Clinical Trial Drug

Here is a news article about the clinical trial drug (called AP23573 or ridaforolimus) that I might be getting:

And here is a "fact sheet" on ridaforolimus:

Wednesday, March 17, 2010

Ginger and MaryAnn

I've been complaining about Metformin-induced nausea for a couple of weeks now, and it never occurred to me to use ginger.

When I got radiation last June, I was slightly nauseated and a few sips of ginger ale helped enornmously.  Ginger snaps were awesome.  Anything with ginger helped. Nancy mailed me ginger cookies; Frankie mailed me ginger bread; Karla mailed me ginger tea. (Sorry if I forgot anyone.)

A couple of days ago, I noticed ginger ale in my fridge. It was sugary regular ginger ale, which is not such a great idea with the diabetes.  (The nurse said it was better not to drink your carbohydrates.) But a few sips did wonders for me.

Right now, ginger snaps and ginger bread seem like such a waste of my carbohydrate servings for the day. So this weekend I decided to try eating a sprinkle of ground ginger, which is the "active ingredient" after all.  And it worked!

Yesterday I was at work, feeling pretty sick for hours, and my friend Carol offered to go to the drug store to get me Dramamine. I countered with a trip to the grocery store for ground ginger, and she agreed. So I got a ground ginger delivery at work yesterday!  And it did the trick.

Thursday, March 11, 2010

Preliminary Report: No Growth!

We're still waiting for the final report, but the preliminary report from my scan today is that nothing grew.  Yippee! It's been five months since chemo ended, and nothing has grown.

It was a pretty long day.  I am glad Lou was there.

Yesterday I talked to my clinical trial nurse to find out if I really needed oral contrast. She said that I had to be ready to request the oral contrast (in addition to the intravenous contrast) if the radiology department did not offer it to me. My nurse explained that the people running the clinical trial required oral contrast and that they had been dissatisfied with the January scan because there was no oral contrast.

Well, I love Duke, but gosh, today the people in radiology were very dismissive at first.  When I said that I had been told that I needed oral contrast, more than one person just said, "No you don't," and would not even listen to me. Finally I planted myself in front of the nurse's desk and explained that the clinical trial required the oral contrast. The nurse in charge launched into what was clearly going to be a long lecture on why oral contrast is no longer used at Duke. Grrrr. I said that I wasn't going to argue about it, that I had been told very adamantly that I must have the oral contrast, and that if they didn't agree they were going to have to work it out with my doctor.

Okay, so my voice got a little quivery and I relied again on chemo pity, but after that they were very nice and eventually I got two big cups of some disgusting stuff to drink.  Nothing like having to argue and fight for something that I knew was going to gross me out.

(My hair is almost grown back to the point where I won't get any more chemo pity, but I think it is something that I can live without.)

Anyway, it was well worth the effort because the scan looks good, nothing has grown, I get to stay on the clinical trial, and I won't even have to think about oral contrast for another eight weeks!

Wednesday, March 10, 2010

Family Outing Tomorrow

Last night I told Lou that I am a little nervous about tomorrow's scan. I think I am always nervous right before a scan, even though I am still confident that I am getting the clinical trial drug, and confident that it is working.

He offered to come along for moral support. At first I said no, because it can be such a drag to hang out there all day.  I just bring a book and read. On a scan day, I got for bloodwork, then a scan, and then a couple of HOURS later I see the doctor with the results of the scan. (Don't get me wrong, I still love Duke and the sarcoma specialty center, especially when I hear from people that they have to wait a WEEK or more to get the results of their scans. Waiting is torture.)

I realized how much more fun it would be if Lou came along.

So, he'll be joining me tomorrow!  I'm pretty excited.  Plus, we are listening to a Dean Koontz book (The Husband) in the car, and we'll be able to listen for about an hour and a half (round trip).

Tuesday, March 9, 2010

Thursday is Scan Day

This Thursday I go to Duke for my second CT Scan after starting the clinical trial for AP23573. Let's hope that everything stays the same size again.

About a month ago, someone from Duke called to ask whether I had been given oral contrast before my last CT Scan. I had not. She said that I should have been and suggested that if they don't give it to me this next time, I ask them about it.

I'm not sure how I feel about that. I don't like the idea that the CT Scan people didn't do the right thing, and I'll be pretty weirded out if it happens again. On the other hand, I cannot even remember the name of this nurse who phoned me.

I think that I'll call my clinical trial nurse today and see what she thinks.

Monday, March 8, 2010

New Strategy Is Working

The new strategy of spreading out the two Meformin pills seems to be working.  I take one at breakfast and one at dinner, instead of two at lunchtime. I have been a little nauseated for a short time every day. Nothing like last Friday, when I was completely nauseated for hours.
But I have also been feeling lousy: tired, achy, and just not right. I'm assuming that it's just part of getting used to the Metformin and maybe also just the effects of high blood sugar. My primary care physician said that people with high blood sugar often have pain in their abdomen.

My numbers still are not fantastic.

Poor Lou, having to put up with me.

I took a long nap yesterday afternoon and woke up feeling pretty good. This morning I feel pretty good and am looking forward to going to work.

Two movies I tried to watch this week but quit after about ten minutes:
  • Slumdog Millioaire
  • Mirrors

Saturday, March 6, 2010

Completely Nauseated

Oh my God, I got through chemo twice and only had three days when I was completely nauseated and ready to barf. But now after two days on Metformin, I was so completely nauseated, I was sure I was going to barf on myself.

On Wednesday I increased the dose of Metformin from 500mg to 1000mg. On Wednesday night, I was slightly nauseated but assumed that it was my chicken dinner acting up. Thursday night when I went to bed, I was really nauseated, so much so that it took forever to fall asleep. And then Friday morning, as I drove to work, I was increasingly nauseated till I was sure that I would have to pull over and barf by the side of the road.

I would have just turned around and gone home, but I had papers to deliver to someone at work, and a lot of work to do to meet my looming deadlines.

It was awful. Once I got to my office, I decided that I could barf in my trash can if I needed to. I remembered that the Metformin info sheet from the pharmacy mentioned nausea as a possible side effect, so I surfed the web and found a million hits on people being nauseated on Metformin. Fiver percent of people prescribed Metformin (or another drug like it) actually stop taking it because of the nausea. So I called my primary care physician's office.

If chemo didn't make me barf, then by God some diabetes medicine isn't going to make me barf.

The nurse called back with a plan. Even though the pills I am taking are extended release, I am going to try taking one at breakfast and one at dinner for the next couple of days. If I am still sick on Sunday, then I can back it down to one pill per day and call the doctor on Monday for new instructions.

So on Friday, I drank a lot of water but didn't eat much.  Around 1:30 just before the cafeteria closed, I got a hard boiled egg.  Later in the afternoon, the nausea went away. At 4:30 I ate some apple with some peanut butter. And then I had a normal dinner.  No more nausea on Friday.

And no nausea today.  Good thing because we have big plans today.  Lunch at some restaurant in the American Tobacco District, a play at the DPAC, and then dinner out with a bunch of neighbors to some steakhouse in Clayton.

Friday, March 5, 2010

Must Eat Carbs

On Tuesday I had an hour long, private assessment as part of my diabetes management class. It was a real eye opener, especially about food.

The woman performing the assessment was an RN. I said that my number one goal was to figure out what I am supposed to be eating. A nutritionist will talk about that in detail during the day long class, but I needed some guidance now. (The day long class will be on March 23.)

I am supposed to eat carbs at every meal! So my lunch on Monday, 4 oz meatloaf with a cup of steamed broccoli and caulifour, was not good. Sure, there were some bread crumbs in the meatloaf but that is the only carb in that meal.

I have been avoiding carbs for so long, it is funny to have someone tell me that I must eat carbs at every meal, 9 servings per day.  Portion size matters: one serving of carbs is 15 g, which is 1/3 cup rice or a small orange or a slice of bread.

It really helps that my appetite is decreased. A third of a cup of rice actually looks reasonable to me.

There was a strange, unpleasant moment during my assessment. First I have to tell you what an A1C is. It's a measurement of how high your blood sugar has been over the last two months, based on the interesting fact that sugar molecules stick to blood cells, and blood cells live for about 2 months.

So the nurse was telling me that I ought to aim for an A1C of 7 for now, but once my cancer was cured, I should aim for an A1C of 6.

"My cancer won't be cured," I said.

She pointed her finger at my and said very emphatically, "YES IT WILL."

"No, it won't."


I was sort of shocked that she was continuing to argue with me. It seemed as though she thought if she could make me say that it would be cured, then by golly it would be cured.  I hate that. As if it were so easy, to just chant, "I am cured, I am cured," and magically I am cured!

I realized that I had not made it clear that I had metastacized leiomyosarcoma, eight tumors, in three different areas, and that although chemo had caused them to shrink, none had disappeared. Back in June 2009, my doctors all made it clear that they could not cure the cancer but that we had a very good shot at beating it back and controlling it.  (And they were right. We did beat it back, and we are controlling it.  Yahoo!)

So I sat back in my chair and said, "My doctors have made it clear that they cannot cure the cancer. Of course I'm praying for a miracle," I raised my arms up toward heaven.
"But what about the clinical trial?"
I had told her all about the clinical trial because it was what was making me diabetic. "That won't cure anything. It's just to keep the tumors from starting to grow again."
And that finally closed the topic.
After I left, I got kind of upset. I don't want to have to convince someone that the cancer cannot be cured. I don't really want to think too much about how it can't be cured.  I just want to focus on TODAY. I feel pretty good today, I can go to work today, and I can have fun with Lou today. All the tumors stayed the same in the last scan, nothing's growing, and that is worth a happy dance.
Of course, I have done all the right things, updated the will, updated the advanced directive stuff, reviewed my beneficiaries, and talked about important things with Lou.
If I have two years left, then I want to have as much fun as I can. If I have ten years left, then it would be a shame if I spent that whole ten years worried about dying. Think of all the fabulous vacations I could have in ten years!  Might even get to Egypt some day to see the pyramids!

Tuesday, March 2, 2010

Three T's

On Friday, Dr Morris reminded me that he wants to hear about any new symtoms that affect my ability to walk and go to the bathroom. (Yikes.) All the nerves that control those functions go through the area that we irradiated last June.

He explained that when new symptoms develop, the cause is one of the following three T's:

  • Treatment Related
  • Tumor Related
  • Totally Unrelated

I laughed at Totally Unrelated. It was so unexpected.

The pain in my back and leg (from the tight psoas muscle and bulging disc) is back, and I am certain that it is from those nights I jumped on the exercise bike and frantically rode for like 5 miles to try to get my blood sugar down.

Back in December, my physical therapist warned me that I would have to slowly work back up to a reasonable length of time on a cardio machine because otherwise I might stress out that muscle.  Too bad I did not remember her warning till after the damage was done.

I had been in pain for about one week when I realized I had better go back to Avante Physical Therapy for some intervention. On Saturday, I got a fantastic medical massage, and yesterday I saw the physical therapist.  The pain is already greatly reduced.  That is good news, because Dr Morris said if it did not respond quickly to the PT then he would suggest an MRI to see if there is something new happening.

He's a great doctor. He reminded me that because we can't cure this cancer, we are focussed preserving and improving on my quality of life -- and me walking around in pain is not such good quality of life.

I was a little bummed when I left because the whole appointment served to remind me how serious radiation is, and that I could still develop problems from the treatment, like bone fractures in that area. On my drive home, I called my friend, Donna, and she cheered me up pretty quickly.

I'm still completely thrilled about having had CyberKnife. I feel really lucky that I had access to pinpoint robotic radiation to seriously mess with that tumor. If in the future there was another tumor that needed to get slapped with radiation, I wouldn't hesitate to go back.

The best part of the appointment was when I got to relay the info that the tumor had actually shrunk significantly according to the October 15, 2009 MRI.

Oh, and the first doctor I talked to (Dr Laura Somebody?) showed me some yoga breathing that is easy to do and has been proven in studies to improve lung function for people with mild asthma. Cool.