Friday, April 29, 2011

Freaky Sparse Hair

About 75% of my hair fell out maybe 3 weeks after chemo started. That means about 25% is left on my head. It's a tenacious and stubborn 25%, too. It keeps growing. It remains firmly rooted. It catches the sunlight when I am outside without a hat.

And it is starting to look completely freaky!

It's long and sparse. More important, it itches under my hat!  Not good. Do not want to be lifting the hat to scratch. Might give people the impression that I have fleas.

I am going to see what happens if I try to shave it myself, in the shower.  Cross your fingers.

Thursday, April 28, 2011

Haven't Forgotten You

I haven't forgotten about you! I have just been feeling really good, and haven't have anything to blog about.  I am sleeping well, and I have a lot of energy during the day.

I expect to continue feeling great right up till I go in for more chemo next Wednesday, but let's not ruin the mood by thinking about chemo.

There has been a little discomfort in my chest, but two Advil take care of it.

I have been walking more. There is now a sushi restaurant at work, but it is a bit of a hike to get to. I decided to give myself permission to have sushi any day for lunch, as long as I am willing to walk there.  I should measure the distance in the car, so I can report to you how far it it.

Tuesday, April 26, 2011

Top Sarcoma Centers

I just got email from another person with leiomyosarcoma who said that she was told the same thing, that if the metastacized tumors are in multiple systems then no surgery for you. But she said, no surgery did not mean no radiation and no RFA...

So maybe there is more out there for me beyond chemo.

Lou and I just looked at the list of "top sarcoma centers" in the US. If we go, he wants to turn it into a vacation. He is so funny. He always wants to have a good time. Imagine that.

Here is the list:

Cleveland Clinic Sarcoma

Dana Farber Cancer Center, Sarcoma page

Huntsman Cancer Institute

Mass General Hospital Cancer Center

MD Anderson Sarcoma Center

Moffitt Cancer Center Sarcoma Program

Memorial Sloan-Kettering Cancer Center, Sarcoma page

University of Michigan Cancer Center, Sarcoma Clinic

Jonsson Comprehensive Cancer Center (Los Angeles)

This is not a comprehensive list.  It is just someone's opinion of "major" or "top" sarcoma centers.

Monday, April 25, 2011

Time for Walkies

Sam is definitely happy with me because I have been taking her for walks a lot more often. She does this thing where she stares at me pointedly, demanding a walk. That stare is different from the one that she uses to demand a cookie.  And yet different still from the offended stare that she uses to indicate that her dinner is late.

Actually, I need to make this post quickly this morning because Lou just promised Sam I would be walking her this morning before I go to work.

Today at work, there is much excitement afoot.  We will be choosing our new offices!  The entire group is being moved to one end of the building together. Each person will choose their new digs in order of seniority based on hiring date. I am pretty far down the list and have no hope of a window office.  Oh well... there go my plans for plants.

I am not sure whether I have mentioned that I finally got on an email group for people with leiomyosarcoma. I posted an email to introduce myself, and then a week later I asked a tough question: whether there are other people who have been allowed to have surgery, even though they have tumors in multiple systems. I didn't get much of a response at all. It was a huge disappointment.

The one useful email that I received was an interesting question.  A lady asked whether I have been evaluated at a "major" sarcoma center. I thought that since I was at a sarcoma center, I was doing well, but apparently there are some sarcoma centers that are just more huge and vibrant than others.  So I am thinking about it.

Otherwise, I am feeling good.  We had an amazing Easter dinner at our neighbor's house last night. It was a lot of fun, with great food and even better conversation. We all had assigned seating, at two tables in two different rooms, so that each couple was separated. I really enjoyed myself, but I did not have as much stamina as I expected. 

Okay, got to run, er, walk now.

Sunday, April 24, 2011

Migraine on Saturday

Saturday morning, Lou and I were on the web looking at laptops when I noticed tiny blanks spots in my vision.  "Oh no," I said, "I think I am getting a migraine!"

I wanted to wait and see what happened, because I was incredulous that a migraine would occur on a Saturday to ruin my day off. Luckily, cooler heads prevailed, and Lou suggested I take the Maxalt right away. I did, and that was the right thing to do. Because I caught it so early, it was more of an annoyance than anything serious.  Sure, I had the sparkly lights and some pain, but then the headache stopped in its tracks.

We were able to go out to lunch and then do a Costco run as planned.

Later I took a nap so that on Saturday night I could visit some friends in Holly Springs.

All in all, it was a pretty nice day yesterday.

Friday, April 22, 2011

BCBS Does Not Pay For RFA

Yesterday I got a policy statement from BCBS which explained that they do not pay for RFA because it is investigational. This has been their policy since 2007. It is intended, they say, for people too weak for regular surgery, and there is not enough data about the long term (4 to 5 year) benefits. 

FYI, I am not too weak for surgery. My situation is that I have been told that I can't have regular surgery because I have cancer in multiple places.

I got this info because I had asked my nurse caseworker to check into it for me.

I do not even know if RFA would work for me (if my lesions meet the specific criteria) but I was so upset anyway!  I had a total meltdown yesterday morning. Actually, I felt pretty good afterward. So I sent followup email to my caseworker asking for info about cryoablation, too. I wonder if that is investigational, too.

Of course I will keep my appointment with the doctor. Who knows what I will find out. I really want to know if I am a candidate for this. It is not something you can wait a couple of years to do because the tumors have to be small.  If you wait too long, and the tumors grow, then it does not work.

Thursday, April 21, 2011

Wandering Around London Today

Lou and I would probably be looking at Egyptian antiquities in the British Museum right this minute -- if we had not cancelled the trip to Egypt!

Yesterday we would have flown to London. We would have landed this morning. Our plan was to stay awake as long as possible so we could get over the jetlag quickly. He is always better at that than I am, staying awake. We figured it would have been much betetr to wander around London half asleep than Cairo half asleep.

We would have had the opportunity for like a day and a half to see a lot of Egyptian stuff, then we would have headed over to Cairo to join the group and start the tour.

It would have been awesome!

This afternoon, I will serve myself afternoon tea as a sort of tribute to the cancelled trip.  I will have to make sure I use the tea towel that is printed like the Rosetta Stone (which we bought at the British Musuem when we were in London years ago).

I guess I got over being really disappointed about this trip back in March.  Maybe next year we can go.

Anyway, I have something more exciting to think about. The day before yesterday, I strongly urged a friend to stop dilly dallying and make a certain doctor's appointment.  Later that day, I realized that I needed to take my own advice. Why should I wait two weeks to ask Dr. R's opinion about radiofrequency ablation (RFA)? Dr R is brilliant and awesome, but he is a chemo guy. If I want to hear about RFA, then I need to talk to an RFA guy. So yesterday I called Dr Christensen at Duke. I was looking only for an appointment, but I spoke with the doctor himself. He will review my scans to see whether my lesions meet the specific criteria for RFA.  Lou and I will meet him on May 9 to hear what he thinks.  (He said he also performs cryoablation, which is where he freezes the tumor, and that might be something to consider.)  I am pretty excited. It might work out, and it might not. But either way, I took control of the situation and asked for what I want.

Wednesday, April 20, 2011

Breakfast Out

I must be feeling good!  Lou and I went out to Brig's for breakfast this morning. That's a benefit of waking up so early in the morning.  As soon as I am done here, I am headed into the office, so I can work a half day before I crash.

A lot of strangers have been coming up to me lately to wish me luck or tell me about their beloved dead relatives. (It's almost always very sweet, and I appreciate people telling me they are going to pray for me.)

But yesterday I finally realized that if I were wearing a wig -- if I were hiding the evidence of the chemo -- then no one would be coming up to me. That might not seem like a huge breakthrough to you, but it was for me.

Wearing a hat is like advertising the chemo. 

Wearing a wig is hiding the chemo.

Before this breakthrough, wearing a hat meant COMFORT and FREEDOM.  Wearing a wig meant HOT and ITCHY and PUNISHMENT.

I am not putting the wig back on. but at least now I can stop wondering why all these strangers are approaching me.

Tuesday, April 19, 2011

Slept Better Last Night

I went to bed at 9:30 last night and did not wake up till 4:15AM!  It's a miracle!  Then I fell back to sleep till 7:30AM, which was a second miracle.  I feel okay this morning. I do not feel overwhelmed with exhaustion.

I have been surfing the web this morning, reading about RFA (radiofrequency ablation). I am going to talk to Dr R about it.

From CancerLynx:  "Radiofrequency ablation (RFA) is a therapy that is gaining significant ground in the treatment of cancer. The technique involves inserting a needle under the guidance of computed tomography (CT). The needle is placed directly into the tumor. A radiofrequency is then sent through the needle. This RF energy generates heat, which destroys the tumor. There is no radiation involved, except for that from the CT scanner. Some patients can go home the same day of treatment. Most patients will be observed overnight."

Monday, April 18, 2011

Waking Up So Early

Every night I wake up every few hours, and every morning at about 4:30AM I know that I just have to give up and get up.  Luckily, after a few hours, I am back to sleep again.

Even more luckily, I know this will pass soon. This morning was the last dose of Decadron, so the sleeplessness ought to end soon.  Maybe tonight.  Definitely by tomorrow night.

I don't seem to be bouncing back as well as the last time. I am a lot more tired than before. I am good for one event or task per day. Yesterday, we went to the grocery store.  Today, I have to pick up some prescriptions.

Sunday, April 17, 2011


We are fine!

The tornado passed within 6 miles of us yesterday afternoon.  We didn't realize what was happening till our neighbor, Brent, phoned us, because we were watching a Star Trek Voyager DVD. But then we were glued to the news coverage of the tornado yesterday. The news was pretty intense, though. I got overwhelmed and went back to bed. When I woke up, it was all over.

Yesterday and today seem to be following the same pattern:  I am up and feeling fine for awhile, I crash and sleep, then I am up again.

Saturday, April 16, 2011

Happy to Wake Up at Home

It's pretty early on Saturday, about 4:40AM.  I am so happy to be home.

My nurses rushed to get me out as early as possible yesterday. The last dose of chemo was started at 7:00AM, right at shift change.  Amazing.  It went well.  No nausea.

Doane picked up up around 2:45PM. She was lurking in the area and pulled up just as we walked out of the hospital's front doors.  Can't ask for better than that!  On the way home we picked up a prescription. Looks like I might have a urinary track infection this time, so I taking taking something.  I can't drink milk within 2 hours of taking this prescription, though, which is tricky for me because I love milk.

Anyway, yesterday I puttered around groggily, mostly just hanging up clothes that are waiting to be ironed.  Then we watched Start Trek Nenesis on our new Sony Blu Ray DVD player.  Guess I am not the only one who shops online during Chemo Weekends.

It is supposed to downpour later with thunder and lightening.  Perfect weather for a TV marathon.  Till then, I think I might iron.  Or I might put away all the cookbooks in the new cabinets in the laundry room.  Does that sound strange?  It's right off the kitchen. We have never found a good place for these cookbooks in this house.  They have been living in my office, and thus are never consulted.

Friday, April 15, 2011

Today (Friday early)

Today started really really early.  The Ambien did not keep me asleep.  I slept good from 9:00PM to 2:00AM, but then I dozed lightly till 4:30 when I finally gave up and got up.

I have walked six laps around the tower wearing a new knitted cap I got from a box of hats being given to patients.  I also gave a urine sample, and I am waiting to get my port Saran wrapped so I can take a shower.  I walked by another patient's room, and saw that he has Tim Allen's Tootltime sitcom on, so now I'm watching too.

My plan is Starbucks at 6:00 and chemo at 7:00 and home at 2:00.

Oh golly someone down the hall is groaning pretty loudly all of a sudden.

Thursday, April 14, 2011

Today (Thursday late)

Today went really well, too.  I was awake at 4:30 but I didn't get up till 5:30.  Sloth!  Laziness!

I took a shower and went to Starbucks at 6:01AM and got in line with six people already ahead of me.  The place has been open for one minute!

Then I did six laps around the tower.  Not sure what that translates to.

I watched an old movie, Clockwatchers, today, which was interesting but a bit of a downer.  I tried to read my awesome book, The Watchman, but it was too difficult to focus.

I slept a lot.  Meredyth visited in mid-afternoon and cheered me up and cheered me on.  We talked a little bit about work. After she left, I zonked out with a power nap. When I woke up, I was awake and alert and feeling great.

I went for a walk and sat outside in a garden in the fresh air for awhile.

At this point, I have eaten dinner, and my plan is to watch another old movie, Nine to Five, this evening.

Lou comes back early tomorrow morning.  Woo hoo!  The plan is for chemo at 8:30AM and discharged at 3:00PM with fabulous Doane driving us home.  But that's tomorrow.


Yesterday went really well.  We got in a room before noon, and I had one of my favorite nurses.

Chemo started at 4:20PM, which was completely amazingly early.  This means chemo on Thursday will be at 12:20, and then chemo on Friday will be at 8:20AM and I will be heading home around 4:30 on Friday.  Awesome not to have to stay at the hotel next door.

I handed over my Girl Scout as usual.

I was really sleepy yesterday and dozed a lot. Mo dropped by and entertained us with dog competiyion stories and news from the old neighbor hood, then he took Lou home at 5:00PM.  After that, I slept a lot.

Fun size York Peppermint Patties are totally working to keep the nasty taste away when they flush my port.  Much better than other things I have tried.  Amelia had mentioned that poppermint was anti-nausea for many people...

When I was in the elevator with Lou at some point, coming back from Starbucks probably, a lady started talking to me about chemo.  She is a cancer survivor.  It was nice, like, I am part of a huge community of cancer survivors. 

After she left, we decided that there are three camps of people who talk to me:

  • the first camp is like that lady in the elevator.  The the message is "I am still Alive!"
  • the second camp is someone who was a caretaker and basically tells me about everyone they know who dies from cancer, sort of once the floodgates open they can't stop. The message is "Cancer is not easy." or "Just seeing your bald head brought all my pain back up for me!"
  • the third camp is someone who just tells me that they have noticed me and are praying for me. The message is "You are loved."

All three are fine.  All three mean well.

Wednesday, April 13, 2011

doc calls it mixed results

Dr R says the scan shows mixed results, but I think they are pretty good.

We looked at 7 tumors, comparing my newbscan to the previous scan. Two tumors shrank. Four stayed the same. One little bastard grew.

The two that shrank are located at two of the three spots where I had pain, so that explains the pain going away. Strangely, the one that grew is located at the third spot where I had pain but which only gives an occasional weak signal. Not sure what to think.

We are going ahead with the chemo as planned.

Lou and I are sitting in Admitting, waiting for my room.

I am reading a new book. Robert Crais's The Watchman. Excellent.

Sent from my Verizon Wireless mobile phone

Two Hours to Results

Start the countdown: there are two hours left before I get my results!

Right now Lou is calling me, because it's time to take a shower and get dressed.  I have less than 30 minutes before I have to be outside to jump in John's car for the drive to Duke.  I don't want to keep John waiting.

Last night, John, Lou and I went to Genki for pre-chemo sushi.  It was awesome!  Mine was cooked, mostly.

I am feeling pretty darned good.

Tuesday, April 12, 2011

Scan Day Today

I am mildly excited about scan day today.

Finally, science will either verify or refute my gut-level opinion that this chemo is shrinking the tumors.

Why am I so sure it's working? Before the chemo started, I was in pain. Before the second dose, that pain was gone. How can I help but think that the chemo is working?

However, I am only mildly excited (not wildly excited) because I just don't want to get my hopes up too high, in case of disappointment. I don't want to set myself up to fall off the Cliff of Despair because then I would just have to climb back up that rocky cliff face and pull myself back up onto the Plateau of Cheerful Determination, which is surrounded by the Mountains of Contentment. 

So I am saving my wild excitement and my happy dance for after the results.

CT Scan is scheduled for 2:30PM today.

Results are scheduled for 9:30AM tomorrow.

I'll probably go for Chemo Weekend Four on Wednesday, Thursday, and Friday of this week.  Meredyth said she would visit me on Thursday, and I have movies and books to entertain me.

Thursday, April 7, 2011

Occasional and Transcient Side Effects

There are a couple of side effects that I don't talk about much because I really do not like them.

Luckily, they are both occasional and transcient. (Thank God they only happen every now and then, and do not last long, or they would drive me and everyone around me insane.)

So what are they? Difficulty speaking and a lack of emotional control.

Yesterday was a case in point. I have been waiting for months for laundry room cabinets, and finally yesterday they were professionally installed. At first, everything looked perfect. But in the evening, while I was dusting them and adjusting the shelves, I saw a few flaws and a little damage. I became upset, way out of proportion, and overwhelmed with feelings that the entire job was a fiasco and that the cabinets were crap and that nothing is ever as nice as it ought to be.

Then poor Lou wandered in and innocently asked how things were going. When I tried to explain it, I had a really hard time describing the damage to Lou.

The interesting part is that when I sent email to the salesman (who had sent email asking how the install went), I had no difficulty at all making a calm and reasonable list of problems and suggested solutions. It's like, the difficulty in communication applies only to verbal communication.

Anyway, my upset feelings soon passed. Now I am just calmly waiting to hear back from the salesman to see what we can do to fix the damage. And I love the cabinets anyway.


Maybe you are thinking about how Ifosfamide can cause neurologic toxicity and delusions, and you are worried that that is what is happening but I don't realize it. Thanks for worrying about me, but I do not think it is that. There are no rabbits hiding in the new cabinets. And I have had these same two side effects every time I have gotten chemo, in varying degrees of seriousness.

Wednesday, April 6, 2011

Went for a Walk

Today is absolutely beautiful: about 70 degrees, sunny, and breezy. Lou and I went out to lunch and then walked to the gate together.

I have not been walking at all, and it is about time I started again. My friend Jean in England with the same cancer is not walking any more at all because of cancer on her tailbone. Reading her blog made me realize how lucky I am that I can still walk. I owe it to myself to get out there.

Today I huffed and puffed up the hills. I didn't used to huff and puff, back when I was walking all the time. It's just a matter of getting back into shape.

This time of year, everyone is sprucing up their yards, and there is a lot to admire. In out yard, we are planning to move some huge bushes out of a flower bed, and I am looking fro smaller bushes to put in their place.

Well, got to get back to work!

Monday, April 4, 2011

Summer Day

Today will be a lovely summer day here in the Raleigh area! It will be 83 degrees and sunny and windy.

I am going to blog quickly so I can get Sam out for a quick walk before I go to work.

What's my status?

I am sleeping great! And I wake up feeling really good.

There are a few trouble spots on my scalp. And what little hair I have left continues to grow, which looks very freaky.

I have had a few occasions of minor discomfort in my chest area, but they are mild and fleeting. When they happen, I think of what my friend Meredyth suggested: that a tumor is thrashing about in pain as the chemo overwhelms it.

I am still very sensitive to smell. Some strong smells make me feel nauseated, but then it goes away immediately if I get away from the smell. For example, a very good friend gave me a tube of passionfruit lotion, and I loved it at first, but now just a whiff makes my stomach roil.

Saturday was tough on Lou. I felt great and energetic, but I had a hard time remembering anything. For example, we planned what we would do early on Saturday; then an hour later, I suggested something completely different because I had forgotten about the plan. Or, while we were on our walk, I kept asking the same question over and over because the answer had already flown out of my head. Yikes! But that went away by Sunday.

Saturday, April 2, 2011

Feeling Great

Yesterday, I worked for six hours, and I was not completely exhausted at any time. Mid-morning, I did have a hard time understanding something very complicated that someone was trying to explain to me, but I eventually got it when she broke it down to baby steps.  I think I probably would have struggled with it, chemo or no chemo!

Today we have a busy day planned.  We are watching a movie, running errands, and seeing Carol Burnett tonight at the DPAC. Oh and we are finally going to try the Mexican restaurant Dos Peros (two dogs) near the DPAC.

I can hear Lou calling me from the living room.  The movie is cue'ed up and he's gonna start without me...

Friday, April 1, 2011

Asparagus Cure

I just got email that explains if I take a teaspoon of pureed canned asparagus (in hot or cold water) every day, all my cancer of any type will completely disappear.


I just wish I had gotten that email a little sooner. I could have avoided all this boring chemo.

April Fool's Day...

or maybe Asparagus Fool's Day!

I am feeling really good. I went to the office yesterday, worked for four hours, then really crashed with total exhaustioon. But today I am feeling as though I could work a full day... We'll see.

The best part of today will be a Baby Shower at work for an awesome coworker. Ooh, plus dinner out at the most fabulous La Piazza in Garner with Nick and Sharon.