Thursday, February 25, 2010

Diabetes School

When I saw my primary care physician about my high blood sugar, he asked if I wanted to talk to a nutritionist, and I agreed that it was a good idea.

I want to understand what I should be eating (and not eating) for better control of my blood sugar. Some things are obvious, like no more yummy yogurts with 27 g of sugar! Plus, the diabetics in my life have offered a lot of good info, but I want a plan and some handouts. I love handouts. I like looking for typos.

Plus, now that my appetite has decreased so significantly (which is the miracle side effect of the clinical trial drug, let me tell you!), I am not that interested in food and am very open to the idea of getting a food plan. I want to make sure that I am getting all the nutrients that I need so I can stay healthy and strong to fight the cancer, but I still want to keep losing weight.

So I called the nutritionist for an appointment, and she suggested that I go to the adult diabetes management program at Wake Med Cary instead. It sounds great: a one hour private assessment, a full day class, followup appointments, and a support group if you like that kind of thing ;^) The program is run by a nurse and a nutritionist. Before I can sign up, my primary care physician needs to fill out a referral, so I am in a holding pattern right now.

Tomorrow afternoon I go see Dr Morris at UNC for my six-month followup after CyberKnife radiation surgery. I am really looking forward to telling him about how that tumor in my psoas muscle shrank significantly. I could not be happier about CyberKnife and my experience with Dr Morris and his team.

I have to look back in this blog so I can tell him exactly how much it shrank. It is so cool that this blog is a record of what has been happening, because I would never remember it all. Even the really shocking stuff, the stuff I thought that I would never forget, well I have forgotten most of it. Probably a good thing!

Monday, February 22, 2010

Can I Blame Chemo Brain?

On Saturday Lou and I ran around doing lots of errands. It was fun. One of the things we did was look at weightlifting equipment for home, since we are not going to the YMCA any more.

Anyway, I was pretty tired mid afternoon, so we went home and I was crashed in my Lazyboy when the phone rang. The caller ID said STARBUCKS, so I picked it up.

It was the manager of a Starbucks, calling to let me know that she had found my pocketbook in the store a little while ago.

"You're probably frantic," she said, "wondering where it was and how you were going to get it back!"

"Actually, I had no idea that it was missing!" I replied.

Really, I had no clue yet that it was missing. I thought that it was in the back seat of the car. I might not have noticed for another few hours, if she had not called.

Oh how I wish I could blame this on chemo brain! But I think it is just me.

Anyway, I rushed back to Starbucks and retrieved my pocketbook. Everything was still in it, thank God. The whole identity theft is such a mightmare.

Saturday, February 20, 2010

Should Not Have Changed My Diet

Darn it, maybe I wasn't listening when I got my instructions about testing my blood sugar for a week!  Yesterday Ann-Marie said that I should NOT have changed my diet at all. That would have given them a better picture of my situation with the high blood sugar.

But I did change my diet because those high numbers freaked me out and I kept getting a headache that would not go away. What were the changes? Not too drastic. No more yogurt with 27g of sugar in the afternoon!  And I stayed away from bread as much as I could. Stuff like that. 

Anyway, it's clear I need to get the blood sugar under control, and Dr R asked whether I wanted to see my primary care physician or have them find me someone at Duke. I chose my fabulous primary care physician.  I got an appointment to see him on Monday morning.

One interesting side note: if he puts me on Metformin, there is some kind of restriction at Duke regarding CT Scans and Metformin, like I would have to not take the Metformin that day till after the scan.

I read through the clinical trial drug paperwork again and saw that 10% to 20% of patients get the high blood sugar side efect. I always was at the top of my class ;^)

Friday, February 19, 2010

Submitted My Report

Yesterday I emailed all my blood sugar numbers for the week to Ann-Marie, my clinical trial nurse. She had asked me to chek my blood sugar three times per day, and I did. Some days, I checked four times but I didn't send in the extra numbers.

I should have also phoned just in case she doesn't check her email often, but the day got away from me.

I am hoping that they write me a prescription for some low dose diabetes drug, if only to make this headache go away and stop me from drinking so much water all day.

I saw at Rite Aid for about $20 I can get my own blood monitor in PINK.  Nice.

When I hear something, I will post it.

Wednesday, February 17, 2010

Lunch Plans

Today at lunchtime, I am going to see Amelia for a Healing Touch (HT) appointment. I have gotten out of a regular routine, and I am looking forward to doing it like every other week. There are still enough weird side effects from the clinical trial drug that I need it.

I always feel energized after HT. And there have been times when I got on the table with pain, and that pain was gone when I got off the table.

A couple of weeks ago, I slipped in the rain and whacked my knee pretty good. I limped around for awhile. Then I visited Amelia in her office to talk about a project I am working on (actually to see if I could just copy a bunch of work she had already done). During the meeting I had to keep pushing back from the desk because I could not keep my knee bent without pain. At the end of the meeting, she asked if I wanted her to try to help my knee. She held one hand over my knee, and the other hand up in the air pointing away, and then the pain went away. I practically skipped across campus back to my office.

I don't understand it, and I don't care.

Monday, February 15, 2010

Three Movies on Sunday

How can you tell that football season is over?

Lou and I watched three movies on Sunday!  
  • Chinatown
  • The Two Jakes
  • John's Carpenter's The Thing
These are such old movies, I can't imagine that I need to warn you that the next couple of paragraphs are going to give away details... So SPOILER ALERT.

I had forgotten that someone has cancer in The Two Jakes and chooses to blow himself up by lighting a cigarette in a house that's filling up with explosive fumes. I was thinking sitting there on the couch cuddled up with Lou, thinking, "Well, everyone has to make that decision for themselves," as if in real life a gas-filled-house opportunity ever rolls around right when you are dealing with a very bad cancer prognosis.

John Carpenter's The Thing didn't have any cancer surprises. I've seen it a million times. I love that movie. There is this scene when the head on an alien-infested dead body rips itself free from the body, grows spider legs and googly eye stalks, and starts to sneak away out the door. One of the guys says something like, "You gotta to be F-ing kidding," and then another guy uses the flame thrower on the escaping head. (I think that line sums up where I was at last April and May.)

And here is the scene:
http://www.youtube.com/watch?v=q6666oBksFc

Sunday, February 14, 2010

The Magic of Exercise

Last night my blood sugar level was 299, yikes. Lou suggested that I go ride the exercise bike for 30 minutes and then re-check my blood.

So I went up and read Pagan Babies by Elmore Leonard and rode for 3 miles in 30 minutes. The result:  my blood sugar level dropped 29 points to 270.

Who knew that there could be such immediate gratification?

Saturday, February 13, 2010

Sweetheart, Sweetie, Sugar Pie

My appointment on Thursday with my oncologist went really well, although it seemed to take forever, which meant that I had a lot of time to read my book and linger over my hospital cafeteria lunch.

The one surprising and unpleasant bit of news was that my blood sugar level is high. This is just another typical side effect from the clinical trial drug, they hastened to explain. It does not mean I am now diabetic.

My blood sugar was at 250 about 4.5 hours after I had eaten anything. Yikes. My breakfast that morning had been what I thought was a virtuous bowl of cereal. I had mixed two oaty flaky fruity cereals together. The fruity part (cranberries and diced figs) must have been what sent my blood sugar soaring. Plus all the carbs from the flakes probably didn't help.

The high blood sugar explains my headache, too. The headache got worse after every meal.

So, for the next week, I will be checking my blood sugar three times per day, recording the results, and then emailing all the data to my clinical trial nurse Anne-Marie.

Ouch, the finger prick hurts. It takes a lot of resolve to push the button on the jabbing tool when I know that I am about to stab my finger. Yes I am a baby :^) The monitor I am using requires very little blood, so I think I will try to prick some other body part and see if it hurts less than my fingers.

My numbers have dropped now that the cereal is out of my system, but they are still not great: 155 to 211.

That reminds me, I had better go chuck those two cereals into the trash. Too bad I already threw out the boxes; it would have been interesting to check the nutritional value.

Thursday, February 11, 2010

Crunchy Cheesy Ouchies

Tinalynne and I bought snackies for the three hour drive to the cemetary. Strawberry Twizzlers for her, Red Vines for me. How could two old best friends be so diametrically opposed to what is virtually the same snack food? Well, they aren't the same. They are completely different.

We also had a bag of Smartfood, which is white cheddar cheesy popcorn. Mrs DeAngelo and I were in the back seat with no supervision, and we did our best to polish off the medium sized bag of cheesy crunchy goodness.

But there was hell to pay later on for me. I had forgotten that if I eat too much of something crunchy like Cheetos, the inside of my mouth gets irritated. With the chemo and the clinical trial drug, the irritation becomes actual booboos and they take forever to heal.

(Of course, if I have just one serving of crunchy goodness, no mouth booboos occur.)

Anyway, for five days I felt a piercing pain every time my inside cheek scrapes against my back molars. Such scraping occurs every time I talk or smile or swallow... But today the pain is gone. Still a little sore, but I do not want to walk around with a mouthful of air to keep my cheek away from my teeth. Such is the price for a cheese popcorn attack.

Wednesday, February 10, 2010

SPROINGGG

I wore my wig in Missoula for the viewing, the funeral, and the luncheon after the funeral. (The rest of the time, I was bare headed or wore a baseball cap.)

My friends here told me I did not need to wear the wig, that I did not look pathetic and chemofied. But I didn't want to be any kind of chemo-distraction or cancer-reminder during those times.

Plus, there was a chance that I was delivering the eulogy during the funeral mass. If Michael's baby sister Jennifer found that she could not go on, she had the option to call me up to take over, but that not what happened at all. Jennifer was perfect. She was composed yet clearly heartbroken and did a wonderful job reading various memories of Michael that had been written.

I have a nice wig. It is very cute. It has three silicone sticky patches that really hold it in place on my head. Plus, having peach fuzz also helped to hold it in place, so it was actually a lot more comfortable than it used to be.

But Missoula is very dry. What I think happened is the dryness affected the sticky patches. By "affected," I mean "rendered them totally non-sticky" so that there was nothing to held the wig on my head during the luncheon. The elastic that is built into the wig started to pull it up my head. It felt as though the whole thing was about to go SPROINGG and fly up into the air like in a cartoon!

When I tried to pull it back down into place in the back, the whole thing slipped backward because the sticky patch on my forehead was not sticking. I had to scoot into the ladies room several times during the luncheon to get it back in place. As I was walking to the bathroom, I was just hoping that it did not look too freakish. There is nothing so wrong looking than a lopsided wig.

Well, as a result, I just could not deal with the wig. After the luncheon, we assembled at the cars for the 3 hour drive to the cemetary, and I pulled off the wig and stuffed it in a little plastic bag.

When we got to the cemetary, it was cold and snowing, so I put on my hood and looked like one of the crowd.

And there was a heck of a crowd there at the cemetary in Columbia Falls, which was where Michael grew up. Someone counted 67 people, plus the military personnel who performed the 21 gun salute, Taps, and the moving presentation of the American flag.

Falling snow muffles sound and gives such a fresh taste to the air. It was beautiful and peaceful.

Tuesday, February 9, 2010

Home Sweet Home

I arrived home on Sunday, around 9:30PM, after a long but easy day of travel. When I pulled into the garage, I bumped the car into the big Christmas tree box like I always do and was flooded with happiness to be home.

Lou carried my suitcase in for me, and Sam gave me a warm sniffy welcome.

I can't write about the trip yet, except to say that I am really glad that I went. I hope that I was a help.

I slept about ten hours on Sunday night, and eight hours last night, but I am still exhausted. (I never got eight hours of sleep during the trip; there was too much to do every day, and too much to talk about every night when Tinalynne and I were finally alone.) I could go back to bed right now, but I can't, because I need to go to work.

My suitcase is in my bedroom, with everything just dumped out on the floor because late Sunday night I had to find my asthma medicine.

I started coughing again on Sunday. I was waiting for my final flight when a woman sat down next to me, wearing some kind of horrific perfume that immediately made it hard to breathe. I started coughing and choking and quickly gathered up all my stuff and moved away from her. I had never had such a strong reaction before. It would have been nice to know what she was wearing, but I didn't dare go near enough to ask. I tried to keep an eye on her as we boarded; I was ready to ask to have my seat changed if she was going to be near me. But she was in first class. I saw her as soon as I boarded. So I just waited till the aisle was clear enough that I could walk by her holding my breath.

Yesterday I was still coughing, and I was ready to call the asthma doctor, but I have not coughed once this morning.

Wednesday, February 3, 2010

Just a Quick Visit

Lou usually makes all of our travel arrangements. I hardly ever have to do anything except agree that, goodness, I would like to go on another cruise. Tonight we found out why Lou books all our travel. It is because I cannot be trusted.

Here's what happened. I was busy folding and packing and actually doing my famous last minute load of laundry, so my sweet husband offered to go check me in for my flights. A couple of minutes later, he came back and stood there quietly laughing at me. He had discovered that I had accidentally booked my return flight home on Sunday March 7th instead of Sunday February 7th.

Can you imagine what would have happened early Sunday morning when the ticket agent informed me that I was a month early for my flight?!

At first we thought we would have to pay $150 to have Delta change the reservation, but the agent on the phone suggested that we cancel the reservation for free and then just re-book it correctly this time. The good news is, there were more flights to choose from, and my new return trip home will take just over 9 hours (instead of 11 and a half).

The re-booking process went pretty well, except that booking almost identical flights two days in a row apparently set u]off a fraud alert at Citibank, so the Delta website made me use another card, and then I had to call Citibank and convince them that I was the one booking all that travel.

It's been a long day; I don't know why I'm so wide awake. I'm almost all packed. In the morning, I just need to stuff my ice pack, clinical trial drugs, regular drugs, wig, books, snacks, and pocketbook into my carry-on and then drive to the airport...

Ooooh, my longjohns arrived! I tried them on underneath my black suit, and they are perfect and comfy. I hope they do the trick to keep me warm outside on Friday. My suit is a really thin material, not suitable for winter in Montana. Perhaps not suitable for spring in Montana either ;^)

Tuesday, February 2, 2010

Snow Forecast

Sometimes it is good to let practical considerations and silly issues distract from the big picture. I was wondering what to pack for the trip, and so I just checked the weather for Missoula:


Snow on Thursday, with temperatures from 38 (high) to 26 (low).


Clouds on Friday, with temperatures from 37 (high) to 29 (low).


I think I better pack a turtleneck and a sweater. I would have worn my hiking boots to keep my feet warm, but last night I almost fell walking on ice in my darned hiking boots.

Keep your fingers crossed that my new silk thermal undergarment arrives in time from Lands End... yeah, I am talking about longjohns. This must be a new low.

Our friend Scott used to live in Missoula, and he told us one winter it got so cold that trees exploded from the ice inside them.

Delta Flies to Missoula

Tinalynne called last night to let us know that the viewing will be Thursday and the funeral will be Friday.

Lou immediately went online to book me some airline tickets to Missoula, Montana. He spent two hours working out the itinerary on Travelocity, and then the site bounced him out before he could make the purchase. Oooh, he was not a happy camper. I so took over the driver's seat and we used the Delta airline site to get the tickets.

In both directions, I'll be changing planes twice. The trip out will take 10 hours and 16 minutes, and the trip home will take 11 hours 35 minutes. I was hunting around last night for some reading material.

I'll miss three days of work, which is less than ideal at this point in my project, but it can't be helped. If deadlines weren't looming, I would have stayed longer to help.

The bigger news is that Lou also told Tinalynne last night about my cancer coming back, and she took it really well.

(We couldn't say anything before this. I didn't want her worrying about me. Plus, she and Michael said a couple of times that they took hope from how well I was doing. But chemo this summer meant I could not travel, and so Lou and I could not go see Michael, which is something we really wanted to do. It meant so much to us when our friends visited when I was sick.)

That's all I have time for! I have to get to work and do as much as I can before I have to split tomorrow.

Monday, February 1, 2010

My Dear Friend Michael

I am up early again but today it is not the prednisone.

We got the call from Tinalynne around 4:30AM that her husband Michael had passed away after his courageous battle with cancer.

Michael was just the most awesome guy.

You know I blather on and on here about all my tests and my feelings and my side efffects and how many centimeters things are, because it gives me comfort to share the news and for me it makes it so much easier to trudge this road because I am always thinking, "Ooooh, I have to remember to put THAT in my blog!"

But Michael was a really private guy, so I won't tell you much here except that he was someone you were really glad to be friends with, a veteran, active in his church, devoted to his family, wicked ridiculously funny and fun to be with. Never said a bad word about anyone.

In the grand tradition of the Old West, he went back East, found himself a lovely bride, and brought her back to beautiful Montana which is truly God's country. (That's how I met him, when my best friend from college fell in love with him.)

So if you have a moment, would you pray for Michael who is with God in Heaven, and also for Tinalynne and the rest of the family?