Monday, December 28, 2009

Broken Dreams

My sweet Christmas laptop broke!

The mouse pad just stopped working this morning while Lou was fooling around adding an account for himself on my machine. Lou tried everything he could think of to get the mouse working. It is really hard in Windows 7 to use keyboard shortcuts, I'll tell ya. Old Windows standby key combinations just do not work, grrrr.

Anyway, we eventually broke down and called Tech Support for an outrageous $3 per minute... and $45 later, the technician gave up and agreed that it must be a mouse pad hardware failure.

We bought the laptop at Costco so we called the closest Costco to our hotel... They were fabulous! If we had the box, they would have let us return it for a full refund even though we bought it in North Carolina and even though we did not have the receipt!  But we did not bring the box on vacation with us.

So, my economical idea was to run out and purchase a mouse. I was sure that if we plugged in a normal mouse, I could use the laptop just fine during vacation and then deal with replacing it when we got home.

But Lou thinks big.

His idea was to run out to Best Buy and get me another new laptop. We would ship the broken laptop home (in the new laptop box) and then return it to Costco after our vacation. Awesome! Fabulous!

We went to the Best Buy where Brian works and got to say hello to him. It took awhile, but we finally found a laptop that I just completely fell in love with. (It's a Sony Vaio.) Lou bent over and grabbed the laptop box from under the display and ALL THE LIGHTS WENT OUT! The entire store went dark. The laptops around us continued to twinkle away on battery power though.

The employees started herding us all to the front, and then the lights came back on. Whew! So we decided to go look at camera batteries and talk to someone about the return policy and then I had to visit the ladies room and then ALL THE LIGHTS WENT OUT AGAIN! Ooooh, it was totally pitch dark in that ladies room.

So the lights started going on and off. We got in line, hoping that the lights would stay on long enuff for us to check out. But it was not to be. Eventually they announced that the lights would be off for a couple of hours, and everyone in line had to turn in their as yet unmade purchases and leave. We had been laughing and joking around. We're on vacation, so who cares if we're in the dark at Best Buy.

We decided to go to another Best Buy. When we got there, we found the laptop that I fell in love with, and it was sitting right next to a delicate pale pink laptop. "Oh yes," said the salesman, "that one is exactly the same model, except for the color."

Clearly my borrowed guardian angels were the ones who knocked out the electricity to that first Best Buy!  I was meant to get the pink one.

And so you must have guessed, I am sitting here in my PJs in our hotel room, typing away on my awesome pink Sony Vaio while Lou watches Monday Night Football and drinks beer, which he certainly deserves because he is, as I have often said, the best husband in the world.

Oh yeah, and tomorrow is his birthday!

Sunday, December 27, 2009

Who's Buried in Grant's Tomb?

Our vacation started when the limo guy came to pick us up. I was romping with Samantha on the front lawn, killing time, because we were totally ready to leave, with all our luggage (7 bags) lined up on the floor of the garage.

The limo guy did NOT make us listen to classical music, which was a relief.  We ran into no traffic and got to the airport lickety split.  Curbside checkin took four bags off our hands, and we headed in to security where there was no one in line at all.

At this point, I am a little worried about my clinical trial drugs in the insulated bag with both an ice pack and a bag of ice cubes (in case they make me throw away the ice pack).  So I say to the xray screener guy, "I have an ice pack in my suitcase."

He asks me, "What's in it?"

This question confuses me. What is in my ice pack? What does he think is in my ice pack?  So I say rather emphatically, "Ice."

His expression does not change at all -- he just repeats his question, and I realize what he really wants to know is what I am using the ice pack for.  So I say, "Drugs," and then realize almost immediately that this is almost as bad an answer as "Ice."  So I clarify that it is chemotherapy and he nods and waves me through.

Saturday, December 26, 2009

Cold Hard Cash

I was nervous that I will forget my clinical trial drugs, so Lou suggested I put his wallet in the fridge on top of the drugs.  He won't forget his wallet, ergo we won't forget my drugs.

On a usual weekday, I put my car keys in the fridge with the drugs -- I cannot drive myself  to work without my car keys.  (That wouldn't work today because we are not bringing my keys with us on the trip.)

Only one thing left to be packed:  my wig.  I washed my hair and it wasn't quite dry enough to be packed away last night.

I am so excited about this trip.  Going to have a lot of fun.  I am pretty sure that I will be able to log on during the cruise and update this blog. If not, then I'll say HAPPY NEW YEAR now.

Thursday, December 24, 2009

Teeny Tiny Eyelashes

I have been watching my scalp pretty closely, waiting for my hair to be long enough to stop wearing my wig. I was so obsessed with my scalp that I forgot to check my eye area for signs of improvement.  Till today.

I am thrilled to report that I have loads of little eyebrow hairs, but more importantly, I have teeny tiny little baby eyelashes coming in!

They are pretty invisible at this point but they exist and they bode well for the future.

Wednesday, December 23, 2009

After Dinner Mints

Yesterday I talked to my clinical trial nurse about how to take my pills on vacation.

When I told her Lou's first plan, which involved waking up every day at 6:00AM for a quick breakfast and then taking the pills at 8:00AM, she said that she thought that idea stunk.  "You don't want to have to wake up at 6:00AM every day on your vacation."

She loved the idea of taking the pills two hours after dinner. (That was Lou's second plan.)

She explained that it is okay to switch from 10:00AM to 10:00PM -- as long as I do the entire two weeks at 10:00PM.  It would not be good to do 10:00AM one day and then 10:00PM the next day because I would not have an even amount of the drug in my bloodstream.

So, my clinical trial drug will be my after dinner mints!

While she had me on the phone, the nurse clarified that I am not supposed to have anything but water for two hours BEFORE and AFTER I take the pills.  Yikes. I often drink coffee like an hour after the pills.

Lou pointed out that I won't be able to eat the chocolate that the steward will leave on my pillow every night.  I'll just have to save them for the morning -- or stay up really really late every night!

Saturday, December 19, 2009

Vacation Plans

Lou asked me if I had given any thought as to how I would take my clinical trial pills on the cruise. These pills have to be refridgerated all the time.  Plus I have to take them at basically the same time every day, two hours after a light meal. I usually eat breakfast at 8:00AM, drive to work with the pills in an insulated bag with an ice pack, stick the pills into the fridge in the breakroom nearest to my office, and then finally take the pills at 10:00AM.

For this vacation, I will have to carry the pills onto the plane, in the insulated bag with the ice pack.  Anyone think that the ice pack will freak out the TSA screener?  Maybe I ought to bring just plain old ice cubes.

Getting onto the plane is just the first hurdle.

We'll have a mini fridge in the cabin to keep the pills cold on the trip.  But we have some excursions that start at 9:00AM.  That means I have to carry the pills onto the tour bus in the insulated bag so I can take them at 10:00AM.  I guess that would be okay. I could put a bottle of water in the bag, too, and it would stay cold.

Lou suggested that I wake up every morning at 6:00AM, have some coffee and toast, and then take the pills two hours later at a very convenient 8:00AM. That way, I take the pills before leaving for any excursion, no insulated bag required.  I guess that would work.  Not cool to have to wake up so early every day on vacation.  But it does sound a lot more convenient than dragging the insulated bag all over the Caribbean and maybe losing it while snorkeling.

The other suggestion that Lou had was to see if I could just take them every night three hours after dinner.  (We bumped it up to three hours because dinner is not a light meal.) I am going to ask the clinical trial nurse what she thinks of that idea. It would mean taking the pills at 11:00PM instead of 10:00AM, and I don't know what she'll think of that.

Oh! One last thought:  when we bought our sneakers today, I saw a pink baseball cap that said Life is Good and I thought, "Yes it is!"

Wednesday, December 16, 2009


My ankles occasionally got a little swollen during the Gem/Tax chemo, but that ended 7 weeks ago and it has gotten worse in the last couple of weeks. On Sunday and Monday night, my ankles and feet were lumpy and strange, and they had not gone back to normal by morning -- which is what has always happened in the past.

On Tuesday, my left foot actually hurt to walk on, so I called the nurse for my oncologist that morning to report this new development.

My oncologist called me later that day to talk about it. He prescribed both a diuretic and potassium. The diuretic will get rid of this extra water, and the potassium will stop me from getting leg cramps.

Plus I have to wear compression stockings. Unfortunately, a compression stocking is nothing like a Christmas stocking. Although, if I did hang one by the mantle for Santa to fill, I wonder how many presents he could stuff into it. It's very stretchy. But everything would be crushed by morning.

Well, after one day I see great improvement. I actually have an ankle bone!

I'll be taking these new prescriptions for just one week.

Saturday, December 12, 2009

Beyond a Reasonable Doubt

Dr Reidel called me yesterday to tell me that my triglyceride level was high. It has been creeping up since I started the clinical trial, and it is now officially HIGH.

He was calling to suggest that I start taking a "statin" to help bring down that number. I picked up the prescription on my way home last night, and I took my first pilll last night.  I read the insert carefully.  I am supposed to watch out for muscle aches and weakness of my legs.

High triglycerides are nothing to be happy about, but the thing is, this is exactly one of the side effects of the clinical trial drug. (Sugar pills, not so much.)

So I am feeling really confident that I am getting the real drug. Doing the happy dance!


All day I have been running around with Lou getting ready for the party. I just finished ironing the Christmas tablecloths ;^) and everything is all done. So we are going into the hot tub now, to relax. The I might take a quick nap.

It is weird to be in the hot tub during daylight hours with the golfers driving by in their carts. I usually wave hello to them.

Wednesday, December 9, 2009

Make Me Laugh

Laughing is so good for you. I am really lucky because Lou makes me laugh. I have been known to be a little funny myself.

In the last few months, we have been making an effort to DVR funny shows so that we have something to laugh about. This morning we watched some standup comedy from Comedy Central. We tried two comedians today, but neither one was very funny. We have like eight shows on the DVR, so it is just the luck of the draw.

Last night, we killed Season 1 Disc 1 for The Big Bang Theory. Oh my God, now that is a funny show. I got email from Netflix telling me that another Big Bang disc is on the way to us.

I cannot believe how funny Big Bang is. We laugh out loud through the whole 30 minutes. Of course it helps that we are complete Star Trek geeks. But we aren't physicists.

The first time we saw Happy Gilmore, we were laughing so hard, we had to stop the movie so we could calm down. We have watched the movie a million times now; we sort of wore it out so there is no more laughing out loud.

Tuesday, December 8, 2009

At the Mercy of the Refridgerated Pills

I was thinking about working from home today. I have a little cough and always think it is better not to go to work and cough on people and make them sick.  Plus I'd enjoy spending the day in my PJs in front of my PC. And most importantly, I can get a lot done here with no distractions.

Sure, Lou is here in the house, but he is pretty disciplined when he's working. I think he leaves his office only twice per day: at noon for lunch and then again at 3:30 for green tea. Sam the dog sleeps all day. Sometimes she comes in here and demands to be petted by bonking my left arm with her head. She's very insistent. I mouse with my left hand, so she definitely interrupts my work.  But it is nice, except I end up with Golden Retriever fur all over my keyboard. Of course, this is not nearly as bad as Spike the cat (God rest his soul) who would actually walk across the keyboard to get my attention. I'd end up with fsjbndaigfvpoe5934 in my document.

Anyway, back to me contemplating working from home. 

I realized that I can't do it because I left my clinical trial pills in the refridgerator in the breakroom at work. So I have to go in to the office. In exactly one hour and forty-five minutes, I have to take four pills.

That's fine. I can keep my office door shut. That ought to contain the germs.

Saturday, December 5, 2009

Think of Me

The Phantom of the Opera was fabulous. It will be at the DPAC for a month, so if you are in the Raleigh area, go Go GO!

Lou and I have seen this play seven times now. We saw it in London in 1999, and the guy who played the Phantom in that production was the BEST ever. The guy today was pretty darned awesome too.

Anyway, I got a little choked up when Christine started singing "Think of Me."

Think of me, think of me fondly,
when we've said goodbye.
Remember me once in a while -
please promise me you'll try.

Sitting there in the dark theater with the most wonderful guy in the world next to me, I was slapped with the image of Lou thinking of me fondly after I am gone.

Lousy thoughts like that sneak up on me when I am not paying attention.

But I quickly reminded myself that today I feel wonderful. My numbers are good.  My tumors shrank significantly. I am pretty sure I am getting the clinical trial drug. Clearly I am not going anywhere any time soon.

Plus, the unvarnished truth is, I am such a pain to live with, who's to say that he would think of me fondly  ;^)

Wednesday, December 2, 2009

Alarm Goes off at 5:30AM

I have been feeling pretty good!

As a result I have been working longer hours. And I have been rushing off in the morning to make the vanpool pickup, which means I have to leave the house by 6:45AM. Making the vanpool is minor miracle and shows me how good I am feeling. This time last month, I could not have set my alarm for 5:30AM and then been able to function at all during the day. I needed so much more sleep. Now I just need eight hours. Fabulous!

But my feet are still numb. Last night in the hot tub, I accidently kicked something and apologized to Lou. But I had not kicked him. He said, "You can't tell the difference between me and the hot tub?" but I can't because my feet are still numb.

And I am still bald but I can see peach fuzz without the aid of a powerful flashlight! I wonder if I ought to be doing anything to speed this hair re-growth. Is there a fruit to eat? A cream to apply? I'm very motivated because I am tired of wearing a wig. Last week at the grocery store, I stood in front of some Rogaine products for awhile, but I did not buy anything.

I broke my glasses yesterday, which is a total drag because I cannot read very well with my contacts. I was on the floor in my office, doing my physical therapy exercises. I had taken off my glasses and foolishly set them on the floor next to me. And when I got up, I knelt on them! Not too much damage -- one lens popped out and the frames are bent. Argh. I am supposed to get them repaired this morning at Eye Associates across the street from my office.

My next doctor's appointment is next Thursday for a minor checkup.

My next CT scan is January 14. That will be a big milestone, but I can't start worrying about it now.


Tuesday 12-29-09: Happy Birthday, Lou! Slept pretty well, but kept waking myself up from dreams where I forgot to take important pink pills. Feeling pretty good and headed out for a walk now. Plan to put my feet up later because my ankles are swollen again.

Monday 12-28-09: Another great day! But I am still coughing, and my complexion belongs on a 15 year old's face. Tonight I take my clinical trial drugs for the first time after dinner instead of after breakfast. Dinner at Bubba Gump's ended at 9:00PM so we set an alarm on Lou's phone to remind me to take the pills at 11:00PM.
Sunday 12-27-09: What a great day! I am coughing a lot less. We went for a short walk this morning and then a long walk tonight. I think the sunshine and ocean breeze are helping.

Saturday 12-26-09: I just woke up minutes ago. I am quickly blogging half asleep and checking email so that Lou can then pack away my laptop (it is coming with us on vacation).  Feeling pretty good. I just coughed my first cough of the day -- not too bad.

Friday 12-25-09: Merry Christmas! I am using my NEW CHRISTMAS LAPTOP to update my blog. Santa was very good to me this year. Slept for hours yesterday afternoon after taking my first dose of antibiotics for this cough. Hoping to feel much better soon. Today I must finish packing for the trip.

Thursday 12-24-09: My cough was getting worse, so I got some antibiotics.
Wednesday 12-23-09: I am going to have to start taking the diuretic again because my ankles swelled up today despite the compression stockings.  Feeling pretty good, otherwise.  When I remember to take the albuterol, no coughing. Hey I am on vacation!  Woo Hoo!

Tuesday 12-22-09: Today I do not take the diuretic, so i will keep a watch on my ankles. Feeling good! Started packing for the cruise!

Saturday 12-19-09: Cough! Cough! I starting taking albuterol and my cough is improving. Lou and I got new sneakers today for our cruise. (Our current sneaks were pretty raunchy looking; the red dirt out here stains everything.)

Friday 12-18-09: Cough cough cough cough!  Good thing I am working home today to avoid driving in the expected afternoon snow.

Thursday 12-17-09: Let myself sleep late today, to make up for yesterday. Feeling good! Ankles are much improved. Got a bit of a cough though.

Wednesday 12-16-09: Too early to tell how I feel. I have physical therapy at 7:30AM today. Who makes these early morning appointments? Oh yeah, I do. 7:30AM always seems like a good idea till the alarm goes offFriday 12-11-09: Lou and I have to run a couple of errands this morning. He let me sleep till 8:00AM and brought me tea in bed! Life is good. Checkup yesterday went well. Something related to white blood cells is low but not low enough to stop the clinical trial. My next checkup is mid-January with a CT scan.

Oops forgot to save a couple of days!

Wednesday 12-09-09: It is pouring rain this morning! I feel pretty good. I have a boo boo in my mouth that is not healing. Looking forward to some energy work today with Amelia and Healing Touch. Last time, I don't know what she did, but I felt as though every inch of my skin was buzzing with electrical energy. It was cool.

Tuesday 12-08-09: I've had three mild yet unpleasant side effects for about a week but I don't feel like telling you about them. I'll tell the doctor on Thursday...

Monday 12-07-09: Happy Birthday, Dad! I feel really good today. Got a busy week ahead of me.

Saturday 12-05-09: Headed out soon for a massage which I really need because my muscles ache. (Both my knees are killing me; what's that about?!)  Today Lou and I plan to eat lunch at the Mellow Mushroom and see The Phantom of the Opera at the fabulous DPAC.  Feeling so good!

Friday 12-04-09 Evening Update: Spent the evening writing Christmas cards and watching TV with Lou. What a great night!

Friday 12-04-09: Wow, I slept till 8:00AM and only woke up because the phone rang. I feel great. Tomorrow we go see The Phantom of the Opera!

Thursday 12-03-09: Glasss are fixed! The Eye Associates in Cary NC is always a pleasure to deal with, especially manager Jeremy. I defintely see peach fuzz. Salt and pepper colored, though. But I won't complain about the color. I just want some hair.

Wednesday 12-02-09: Woke up feeling great at 7:20AM! No alarm clock today. Can't ride in the vanpool because I have to go to physical therapy this afternoon.

Thursday, November 26, 2009

Happy Thanksgiving

I have a lot to be thankful for!

My awesome husband

My happy marriage

The comfort I receive from prayer

My excellent job

My "Cadillac" health insurance

My brilliant and fun coworkers

My wonderful parents

Duke's Bone and Soft Tissue Sarcoma Center

Significant shrinkage in all eight tumors

Evidence that I am getting the clinical trial drug

CyberKnife radiation surgery

Avante physical therapy

All my friends

My bossy Golden Retriever Sam

Memories of Molly, Spike, and Winnie

Doane's guardian angels

Long term disability insurance

Life insurance

Foyle's War, 2 new episodes just arrived from Netflix

That I have not breathed a word to my best friend that my cancer is back because I cannot burden her with worry about me because she is struggling with her husband's cancer. I've had the honor of supporting & encouraging her, the way you all support & encourage me.

Tuesday, November 24, 2009

Port Nurses

Woo hoo! My hemoglobin has been hovering in the nines for months, and yesterday it was eleven. No wonder I have been feeling so good! Twelve is the low end of the normal range, so you could say I am almost normal now ;^)

Duke Clinic 1C was jam packed yesterday, probably because of the holiday week. All those Thursday and Friday patients have to be seen at some point, Monday through Wednesday. I sat around for 50 minutes waiting to have my blood drawn. Yikes. Sure, I was reading an Agatha Christie paperback, printed in 1971, that I bought at the Wake County library sale for a buck. The title is something about chimneys. You have to be gentle when you're reading a paperback that is 38 years old.

Turns out that the nurses who draw blood through ports were really backed up -- but the nurses who draw blood by sticking a needle in your arm were less backed up. Lesson learned: in the future, I will tell the desk clerk when I check in that I will take the first available nurse, that it does not have to be a port nurse.

Ooooh, maybe I shouldn't call them port nurses. Makes them sound like they are in the Navy.

Anyway, all is well. I am continuing in the clinical trial.

Etiquette question: Yesterday in the clinic waiting room, I saw someone that I work with. This person seemed to be accompanying a parent. I did not go over to say hello. I was not sure if it would be appropriate or intrusive. Plus to be honest even though I say hello to this person every day in the hallway at work, I do not know their name. Hard to say hello when you do not have a name. Plus, I always wear my wig at work and always wear my baseball cap at the clinic. What if I was not recognizable? That would have been extra awkward.

Saturday, November 21, 2009

Searching for Side Effects

On Friday I was talking to a friend at work about how if you pay too much attention to a list of side effects, maybe you start to manufacture some of those side effects...

I admit that I have been looking for side effects this week, hoping to determine whether I am actually getting the study drug, but at the same time I have been reveling in how awesome and energetic I feel. It has been a wonderful week!

Well, on Friday, I did not feel all that great. I had some exhaustion at midday (a giant cup of coffee helped) and a dry mouth. The dry mouth stuck with me all day, but is gone this morning. It was not so bad that I had to use the magic mouthwash, but I did need to chew Trident all day. The exhaustion was back at the end of the day. How do I know it wasn't just normal end-of-a-long-week exhaustion? We were on our way to Genki for a fabulous sushi dinner when I decided I was too tired (!!) and so we picked up Chinese takeout and headed home to watch the "new" Star Trek movie (which had just arrived via Netflix).

Then on Saturday I had real chemo exhaustion and had to go to sleep for two hours in the afternoon.

So... what do you think? Maybe I am getting the real trial drug and not the sugar pills!

[I'm going to stop obsessing about this now.]

Thursday, November 19, 2009

Powerful Flashlight

If I take this really powerful flashlight and shine the light across my scalp and then lean in really close to the bathroom mirror, I can see some peach fuzz!

Goodness gracious, I am feeling impatient to see some hair growth. I got my last chemo on October 22 -- that is virtually a month ago. I think in 2007 my hair came back faster than this. (Does anyone remember?)

I have completed four days of the clinical trial. I haven't noticed any side effects -- and believe me I have been looking for them because I want to know if I am getting the drug and not the sugar pills.

The study drug comes in a Z-fold card that contains an entire week's worth of pills. The pills need to be refrigerated, and they need to be taken two hours after I eat breakfast. Two hours after breakfast, I am in the office. So I have been lugging this Z-fold card back and forth to work each day in an insulated bag with an ice pack.

If these are fricking sugar pills, then they are the most pampered sugar pills on the planet.

Tuesday, November 17, 2009

Two Trips to Duke on Monday

I started the clinical trial! No way to know if I am actually getting the drug.

It is sort of complicated because the pills have to be refrigerated and taken precisely 2 hours after a small meal.

I spent the morning at Duke! Traffic on 147 made me 25 minutes late (until I hit 147, I was going to be early for once).

I had blood drawn, had an EKG, peed in a cup, answered a million questions about how I feel, saw Dr Reidel, received my drugs in a sack with an ice pack to keep them cold, and then finally headed to the office.

At the office, I got some AWESOME new info from someone; totally cleared up my confusion on a difficult topic.

Then about ten minutes before I was scheduled to take my first dose of the study drug, the nurse called me. She was frantic to make sure I had not taken the drug yet. My heart sank. Had they determined some reason to keep me out of the clinical trial?! But no. They had not taken enough blood, and they absolutely needed to do that before I took my first dose. If I would come back, they would pay for my parking.

I headed back to Duke. It took awhile for them to slip me in between other patients, but they finally drew two more vials of blood. The nurse ordered me to go have a light snack so that I could take my first dose in two hours. The Seattle's Best coffee shop in the Duke Clinic cafeteria had a lovely pumpkin loaf for my light snack.

As I left, I felt completely exhausted, exactly how I felt last week after they took six vials of blood. I drove home and crawled into bed and slept for over a hour. After my nap, I felt fine.

Sunday, November 15, 2009

Clinical Trial Starts Monday

Tomorrow morning, I go to Duke to start the clinical trial for AP23573.

They are supposed to run a bunch of tests (bloodwork, EKG, etc), give me the first dose, and then watch me for one hour to make sure I don't keel over with some kind of adverse reaction.

This is a randomized double-blind study, so nobody is supposed to know if I am getting the drug or the sugar pill. I've been praying to get the drug. I even asked my friend Doane to send a couple of her guardian angels to intervene on my behalf when the coin gets flipped.

I have one task left to do before Monday morning. I need to update the list of medications that I currently take, and I have to add approximately when I started taking each one. Jeepers. Who knows that kind of info? I mean, I can hardly remember what I had for breakfast this morning.

Thursday, November 12, 2009

Physical Therapy Working Wonders

My physical therapy for my bulging disc has been going great. The pain has been reduced by a ridiculous and wonderful 85% after just three visits.

It turns out, my psoas muscle was really tight and causing most of the trouble. That was the reason I couldn't even stand up straight. Well, after everything that poor psoas muscle has gone through, no wonder it was tight and achy. We bombarded it with radiation and chemo! Then the tumor shrank significantly -- does that leave a gaping hole in the muscle or what?

Anyway, I have been working on stretching it out. The first PT appointment was actually terribly painful as the therapist dug into the muscle mercilessly. I had to go home, take a pain pill, and go to sleep. But the results have been fantatsic. I can now stand up straight. Even more importantly, I can sleep again! And walk!

The nerve pain from the bulging disc is almost all gone too. I guess now that the psoas is not pulling everything out of alignment, maybe the bulging disc is not pushing up against the nerve root any more.

Life is good!

Monday, November 9, 2009

Chemo Pity at the Flu Clinic

The Wake County H1N1 flu clinic in Fuquay-Varina was scheduled to open at 9:00AM. I pulled up at 8:15AM and there was already a long line of people. I parked on the street and jumped into the line as quickly as I could. I seemed to be the only adult there without children. The kids were running around playing, and the parents were mostly chatting. I was standing with some very nice people, which is good, because we were together for almost two hours.

It was sunny and beautiful, and I ended up bringing my winter coat back to my car because I did not need it.

I had deliberatly worn a baseball cap instead of my wig, because I wanted it to be obvious that I was really in the high risk category. (Who in their right mind would shave her head just to bluff her way into an early flu shot?) In addition, I had brought along my asthma inhaler with official prescription sticker, in case I needed to further convince them to give me the shot. I am a ridiculous worrier.

For an hour and ten minutes, the line did not move at all. After that, we made slow but steady progress toward the building. We could not see the door from where we were, and I was reminded of being in line outside the Vatican Museum in Rome, thinking that when we finally got around the corner, we would be near the door -- only to find that when we got around the corner, the door was still nowhere in sight.

After about an hour and forty minutes, we had come within sight of the door; at that point, I guess-timated that it would take at least another forty five minutes till I was actually getting the shot. A nurse was working her way down the line, explaining the difference between the mist (live virus for healthy people) and the shot (dead virus for high risk people).

One of the moms said she was surprised that her five-year-old daughter had begged for the shot instead of the mist; she just could not deal with the idea of having something squirted up her nose. (That led to a funny conversation about dogs getting the kennel cough vaccine squirted up their noses, and what is the chance they are really giving kennel cough vaccines in there?) I said that I had to get the shot.

The nurse took a look at me with my bald head (not really hidden by my baseball cap) and asked if I was getting chemo. She suggested that I make sure that I did not end up getting my shot right next to someone who was getting the mist, because the mist could easily disperse in my direction and make me sick. She said that I ought to wear a mask just to be safe and she went back into the building to get me one.

Ten minutes later, the nurse came back with a mask for me, but she said that they had decided to pull me out of the line and give me the shot right away! They didn't think it was a good idea for me to be in line for so long or to be anywhere near the mist. Also, there were apparently a lot of people who showed up sick and germy, and they didn't want me exposed. (Don't worry, the people closest to me all seemed very healthy.)

This was awesome! Chemo pity at its best!

I said goodbye to my new pals, put on the mask, and slipped in a side door. From what I could see, it was pretty crowded in there. I was handed over to another nurse who led me away to the quiet side of the building, gave me the shot, and then brought me out the back door so I didn't even have to walk past the long line on my way back to my car.

Gosh, this was just an excellent experience!

I'll tell you, I have been pretty worried about the swine flu and the availability of the vaccine. I figure that with my asthma and the chemo, I was really high risk.

So one more time, let's do the happy dance!

Sunday, November 8, 2009

Exhausted on Saturday

I was fine when I woke up on Saturday morning around 9:00AM. Amazingly, my back pain has been greatly reduced by that first visit to physical therapy and by doing the exercises that she gave me.

Lou and I had big plans for Saturday: a trip to Costco, followed by sushi lunch at a new restaurant called Japan Inn on Falls of Neuse Road.

On the drive to Costco, it became clear that I wasn't feeling so good. I started arguing with our GPS system, doing U turns, and re-selecting Costco as our destination because I was certain that I had accidently chosen some other destination. It was the chemo exhaustion side effect! It's a ridiculous exhaustion that makes me very difficult to deal with. This was completely unexpected because I got my last chemo two and a half weeks ago and I've been feeling better and better every day for the last week.

We made it to Costco safely, but shopping was difficult. We were trying to buy my Christmas present, which was supposed to be either a laptop or a desktop computer to replace the one in my home office. It took forever to narrow it down to a choice between one particular laptop and one recently marked down fascinating desktop computer with a touch-screen monitor and no tower because all the computer's guts are built into the back of the monitor.

Somehow we got through Costco, got through lunch, and I went straight to bed when we got home.

When I woke up, I was a new woman. With a new laptop! But I won't see it again till Christmas.

Thursday, November 5, 2009

Bananas in the Filing Cabinet

The bananas in my filing cabinet really struck a chord with a lot of you.

When I finally made it into the office on Tuesday morning, you'd have thought the bananas would be uppermost in my mind. But I got distracted getting a cup of coffee and checking email. I think Meredyth IM'ed me asking about the bananas, and that is when I pulled open the filing cabinet drawer.

A strong yet pleasant banana aroma wafted out at me. The two bananas were covered in brown spots, but the skin was intact. There was no leakage. There were no fruit flies.

The bananas were soft but not disgustingly so. In fact, they would have been perfect for banana bread.

I left them on the counter in the break room. People at work will eat anything. Maybe there is someone who loves a really ripe banana, someone who only buys the clearance bananas at the grocery store.

Later I noticed that the bananas were gone.

Tuesday, November 3, 2009

No More Chemo!

Yesterday, the decision was easy to make: No More Chemo!  Instead, I will start the clinical trial in two weeks.

My October 30 scan results show the following:

  • no new tumors have appeared
  • the little lung nodules all stayed the same size
  • the tumor in the psoas shrank by another teeny bit
  • the tumor in the pancreas shrank by another 20%

Overall, this entire four-month course of chemotherapy was highly successful! All of the tumors shrank significantly since the chemo started.

The best part is that I am done chemo. Doing the happy dance!

I should probably clarify that I am done chemo for now. The plan is to monitor my insides closely, and if a new tumor appears or if there is significant growth of the old tumors, then we would use chemo like a baseball bat to beat the cancer senseless again.

This clinical trial is pretty interesting.  It will test the effectiveness of a drug (AP23573) that might help keep the cancer from starting to grow again. Presumably, the longer you can keep the cancer from starting to grow again, the longer you live... the longer you live, the better treatments are available...  and the better treatments are available, the longer you live. (I'm feeling dizzy again. How about you?)

It is a double-blind, randomized clinical trial, so no one will know if I am getting the drug or not. I am going to have to say, "The drug that I might be taking..." but that is cool.

Yesterday we started the ball rolling for the clinical trial.  I signed a bunch of paperwork, and then they took a ton of blood for the baseline labwork. Maybe that is why I completely CRASHED when I got home and slept for two hours.  But after that, I felt fabulous and logged on to work for two hours.

I am very excited to be going in to the office this morning, and not just because I put a banana in my filing cabinet last Monday and have not been back since.

Sunday, November 1, 2009

Rainy Sleepy Sunday

Today looks like it will be a cold, rainy day, perfect for hanging around the house doing nothing in my PJs. The high today will be 58 degrees.

Lou and I are watching the X Men Wolverine movie. (We took a break from the movie so I could update my Halloween posting about the little pirate who ran screaming off our porch.)

Today, nothing much needs to happen. I need to read the clinical trial consent form one more time, and Lou needs to watch a little football.

My oncologist is a Phillies fan, so I might watch highlights from the World Series Game Four tonight so I have some baseball banter for our appointment tomorrow.

Emotionally, I am definitely feeling a lot better than yesterday. I guess I just needed to vent. Plus, I feel so much better. I have some energy again! No more twitching and shaking!


Friday 11-27-09: Happy turkey leftover day ;^) Slept great, feel great, and had a turkey sandwich for breakfast.

Thursday 11-26-09: Happy Thanksgiving! Slept great, fee great, and already baked a pumpkin pie this morning.

Tuesday 11-24-09: Woke up feeling pretty good! I have been sleeping through the night, which is really fabulous but which might not sound so exciting unless you have spent nights waking up over and over.

Monday 11-23-09: I am headed to Duke this morning to get lab tests to see how I am doing on the clinical trial. Had a lot of muscle aches yesterday, so last night we sat in the hot tub with cold raindrops falling on our heads. It was lovely!

Sunday 11-22-09: I am feeling much better today!

Saturday 11-21-09 UPDATE: Total chemo exhaustion around 2PM! Had to crawl into bed and zonk out for 2 hours. Jeepers. I am torn between being THRILLED that I am getting the study drug and BUMMED that I do not feel well. Isn't that just human nature?

Saturday 11-21-09: Lou is off to the gun show, so I am on my own this morning. Sam wants to go for a walk, but it's only 45 degrees out... Slept great. Feel like I am fighting off a cold, so I took some C and some airborne.

Thursday 11-19-09 Night Update: Great dentist appointment today; no cavities. Worked a full day and accomplished a lot. It's almost 11PM, and I have been scurrying around the house tidying up and getting things ready for the house cleaners, who come tomorrow morning. (I am such a lucky woman!) Can you belive how good I am feeling? It is a miracle.

Thursday 11-19-09 Night Update: Great dentist appointment today; no cavities. Worked a full day and accomplished a lot. It's almost 11PM, and I have been scurrying around the house tidying up and getting things ready for the house cleaners, who come tomorrow morning. (I am such a lucky woman!) Can you belive how good I am feeling? It is a miracle.

Thursday 11-19-09: Woke up early for a dentist appointment. Feeling pretty good. Baldness and numb feet seem to be my only complaints. Going to be a long day!

Wednesday 11-18-09: Did NOT sleep well, but I feel good this morning. I certainly did my stretches yesterday and went for a walk.

Tuesday 11-17-09: I did my stretches this morning!

Monday 11-16-09: I have been feeling so good, I slacked off my stretching and woke up this morning in pain again. Nothing like pain to motivate me to do what needs to be done.

Sunday 11-15-09: Happy to report that I am finally sleeping through the night again. No more waking up four times a night in pain! Yahoo.

Friday 11-13-09: Going to see the Steve Miller Band tonight! Feeling good. Slept LATE which felt great after two mornings waking up early. Last night I was exhausted after a long day (10 hours at work).

Thursday 11-12-09: I am feeling pretty darned good! I have not had to nap for the last couple of days. I have only experienced a little exhaustion. Of course, my feet are still numb, and I still have no hair, but who can complain ;^)

Monday 11-09-09: Big day today. Going to try to get an H1N1 flu shot and have another physical therapy appointment for my back. I think that I might feel stubble on top of my head! Is my hair starting to grow back? Feeling okay this morning. Tired.

Sunday 11-08-09: Feeling pretty good this morning. Heard on the news about H1N1 flu shot clinics in Wake County tomorrow morning. I really really want to get a n H1N1 flu shot ASAP! I wonder how early I ought to show up to get in line...

Friday 11-06-09 (Evening) Today was the first day I did not have to take a nap! I did yawn a lot in the van on the way home. If I could have reclined my seat, I could have fallen asleep. This has been a great week. Every day, I have felt a little better. Lou and I just came in from the hot tub. I'm all relaxed and my back does not hurt.

Thursday 11-05-09 Afternoon Update Physical therapy was painful but awesome. It is clear that my psoas muscle is very tight and irritated and causing about half of what I thought was bulging disc pain. Afterward, I was completely wiped out and dragged home and went to sleep. I just woke up, had a cuppa, and am about to log on to work. Feeling pretty good now.

Thursday 11-05-09: Today I have my first physical therapy appointment for my bulging disc. I feel happy and energetic. My right foot is less numb than my left foot. This morning I experienced the Unspeakable Side Effect but now I feel fine.

Wednesday 11-04-09: Woke up at 5:30AM so I can ride in my fantastic Triangle Transit Authority vanpool today. My ribs ache less this morning. My energy crashed again yesterday afternoon and I had to nap. So even though I feel a lot better, I still can't get through the day without a nap.

Tuesday 11-03-09: All my side effects will eventually disappear, but today I woke up with numb feet, rib pain, and baldness ;^) Looking forward to talking to my primary care physician this afternoon about the bulging disc.

Monday 11-02-09: BEEP BEEP BEEP alarm clock woke me up at 6:30AM because we have to be at Duke by 9:00AM. Woke up with all the usual complaints, none too terrible. Looking forward to talking to the doctor this morning.

Sunday 11-01-09: Welcome to November! Don't forget to turn back your clocks. I have only been up for 30 minutes, but I am feeling better today. Hands are not shaking.

Saturday, October 31, 2009

Bald Head Scares Trick-or-Treaters

Happy Halloween!

Last year was our first Halloween in this house. We got 60 trick-or-treaters. It was an awesome night. The minivans would pull up, the doors would be flung open, and a bunch of kids would come tumbling out onto our lawn in their costumes. They bravely did the entire three-house cul-de-sac on foot and then climbed back into the minivans to zoom off into the night. Tonight we got 51 kids, and it was just as awesome as last year.

I wanted to hand out candy to the trick-or-treaters without a hat or a wig or a scarf -- just BALD. I had hoped that it wouldn't be too scary for the little ones. After all, lots of grownups wear costumes to hand out candy. (Lou wore his usual getup: black cowboy hat and Star Wars light saber.)

But a little tiny guy dressed like a pirate took one look at me and ran screaming from the porch, all the way across the lawn, back to Mommy. He did not want to take the candy from the scary bald lady.

So I put on a hat.

I got Super Chemo nine days ago, and I still feel lousy. This was my 6th cycle. They warned me that with every cycle, the side effects would be worse. I know it's not that bad compared to some of the stories I've heard, but I still have the exhaustion, aches, pains, dizziness, hot flashes, shaking hands, twitching eyes, numb feet, dry mouth, ringing ears, and I keep running out of steam and falling asleep. By today, I expected to be feeling a lot better. I hate complaining like this. But I was thinking, you cannot "cheer me on" if I do not tell you that I need it.

On Monday, Lou and I will meet with the doctor to hear the results of the scan and decide what to do next. I am not worried about the results of the scan; I expect more shrinkage. But I have to tell you, the idea that the doctor might suggest two more cycles of chemo just fills me with dread. Lou is great -- every time I say something about whether I can handle two more cycles of chemo, he tells me to just wait for Monday.

Friday, October 30, 2009

Another Big Scan Day Today

Today's Big Scan Day sort of snuck up on us! I did not give you a countdown or much of a warning. To be honest, that last fabulous MRI was so awesome that it wiped away my natural anxiety for this scan.

However, I did just finish three back-to-back rosary novenas, so I was doing my part in the prayer department :^) (For a novena, you say the rosary every day for nine days in a row for a specific favor; three novenas takes 27 days.) First novena, I asked for good results on the upcoming scan. Second novena, I copied Jesus by asking, "Father, if you are willing, please take this cup away from me. Otherwise your will be done not mine." And the third novena, I asked for help making the right decision on Monday -- to choose the best next step in my journey.

Lou is coming with me today. I tried to talk him out of it because I am just going for a scan and won't see the doctor. But Lou won't budge. I think he considers it his duty which is so sweet. I have been pretty pathetic all week, and I think he doesn't trust me to drive to Duke safely without him there to poke me awake if I pass out or get dizzy. (I have not been dizzy since Tuesday morning. I will not be passing out. Nothing to worry about.)

We'll hear the results from this scan on Monday.

Yesterday, I read through the Clincial Trial paperwork -- twice.

Wednesday, October 28, 2009

Do You Want My Posts Via Email?

I finally found instructions on my host to explain how I can configure the blog to send you email whenever I publish a new post!

If you are interested, let me know by sending me email at

But, you won't see quick updates or comments via email.

I have not decided yet whether to email the entire post or just the first 255 characters. The question is, should this email serve as a notification that I have posted something new?

Either way, the email would end with a link to the actual blog.

Tuesday, October 27, 2009

Tired of Napping

Yesterday morning I felt just fantastic and drove in to the office.  But after a couple of hours, I crashed and felt very tired and had to head home.

When I got home, I crawled into bed to sleep because that was all I was good for.  But as I lay there, I so much did not want to take a nap. I am so tired of napping!

Sunday, October 25, 2009

Who is Your Nurse?

The treatment room was super busy on Super Chemo Day, and I finally got called at 3:00PM (my appointment was for 12:30).

My nurse asked if I wanted to have a bed instead of a recliner. I knew that I would be getting chemo for like three hours and figured a comfy adjustable hospital bed would be delightful -- an opportunity to go out in style since I am hoping that this is my last chemo treatment for awhile.

So I get the bed, I get hooked up, everything is going fine... and then the machine starts beeping because it is time to change the bag of drugs. Some random nurse comes over and asks (like they always do) "Who is your nurse?" and for the life of me I have no idea. Usually I read the name off the badge. Usually when I first get into the treatment room the nurse makes a big production about saying, "Hi Karen, I'm insert-name-here and I'll be your nurse today."

But all I could come up with was the fact that this nurse was married on March 24, 1968 which seems like very strange info for me to have, eh? But when she verified my birthdate (March 27, 1965), she immediately volunteered her wedding date because they are sort of close. (Not really though.)

So I say this to the random nurse: "I have no idea who my nurse is, but I know she was married on March 24, 1968," and the random nurse starts laughing hysterically because she knows exactly who I mean. Turns out, Nurse Penny manages to work her wedding date into a lot of conversations. Such as, you ask how old her daughter is, and she starts by counting from her own wedding date.

My red blood cell count was 9.5.

Super Chemo went really well.

My next appointment is Friday, October 30, for another big CT Scan With Contrast. This is the scan to see how well the entire six cycles of chemo did at shrinking the tumors. I am very hopeful and enthusiastic because the results so far have been just fantastic. Then on Monday, November 2, we will decide what to do next: monitoring, clinical trial, or more chemo. Lou will be coming to that appointment to help make the decision.

To prepare for the decision, Dr Reidel gave me a lot of info about the clinical trial, but I will have to type that in some other time. I am overdue for a nap now.

Thursday, October 22, 2009

Super Chemo Day #6

Today we go kill some cancer cells! It is Super Chemo Day, when I get both Gem and Tax. We're using both of the big guns today.

The wierd part for me is that this is #6, so it is probably my last Super Chemo Day. Now that is pretty darned exciting, to have the chemo coming to an end.

But I am living in some uncertainly because there is the possibility that we will decide to add on two more cycles. That happens only RARELY and only if the next scan (Oct 30 with results on Nov 2) shows even more dramatic and significant shrinkage. In that case, there might be some value in two more cycles to see if even more shrinkage can be achieved. Of course, I have to be able to deal with the side effects. And the doctor has said that he is leaning more toward immediately going into the clinical trial instead. So... I am praying a rosary novena asking for help making the right decision and I asked my super-web-skilled brilliant friend Allison in Seattle to surf the web looking for anything she can find on 8 cycles of Gem/Tax versus the standard 6 cycles; we'll see if she can find anything.

What else can I tell ya?

I'll have to keep a mouth full of ice for the hour that the Tax is administered to try to minimize the dry mouth. It is sort of difficult but well worth the effort because it has helped. I hate that dry mouth!

Soon I will be interested in researching the whole bulging disc thing to see what I should be doing. Thanks to everyone who has given me info on what they do.

Ah, fantastic fun planned for the weekend: Cindy flies in from Florida to spend the weekend with us! We are so psyched. Apparently we are ALL required to watch the Miami Hurricanes college football game on Saturday night. Woo Hoo.

Monday, October 19, 2009

Excellent MRI Results!

I just cannot even believe how great the news is!

Dr Reidel just phoned me with the results of Friday's MRI. The tumor in the psoas muscle SHRANK SIGNIFICANTLY! The report says that it started at 4.7 by 4.8, and is now 2.5 by 1.9. Maybe some of my mathmetician pals can tell me what percentage shrinkage that is.

Remember, at the last scan, this is the one tumor that did not shrink at all. But we were cool with that because it had been already beaten up pretty badly with the CyberKnife radiation, and sometimes tumors like that just sit there and never shrink but never grow either.

So why am I in pain?!

I have a bulging disc. A plain old ordinary non-life-threatening bulging disc! It is pushing on a nerve root.

The standard approach would be to use ibuprofen for at least a month to try to get the disc un-bulged, and if that does not work to try a steroid injection to shrink the disc.

The tricky thing is that ibuprofen could cause kidney trouble during chemo, so I cannot take the max. The max is 2400 mg per day. I am going to take 1200 mg per day, see if that helps.

Well, I can tell you, just knowing that it is a "disc problem" and not a "cancer problem" has already helped!

I am sitting here laughing and crying all at once. This is such awesome news. I am so grateful. I have been praying pretty hard for help, and I know a lot of you are praying too, and it is working. I am going to have to calm down a little bit before I jump in the car and head to work.

Expecting MRI Results Today

I expect to hear my MRI results today. On Friday, the nurse said that the preliminary results for an MRI are available within 24 hours, and the final report is available within 48 hours. I am really looking forward to getting the scoop. At this point, I am not even nervous; I just want to know what's going on in there.

I had another night of waking up in pain in the wrong position. Maybe I need to pile up all available pillows to build a fort around me so I can't roll over. Probably wouldn't work. Probably I'd end up tossing the pillows over at Lou in my sleep.  Oh he would just love that ;^)

I had a great weekend for ironing. I brought down some winter clothes and packed away some summer clothes. (It will be 63 degrees today, but it will be 77 degrees this Wednesday through Friday). I'll see those summer clothes again soon enough when we start packing for the cruise!

Speaking of weather, did you know the term "cumulus cloud" was coined in 1804? Just another tidbit from The Age of Wonder, from the chapter about how some Englishmen used fabulous new hot air balloons and hydrogen balloons to gather data about nature. It is funny how long it is taking me to read that book!  Does not help that I keep reading fiction. About a week ago, I finished re-reading all the Harry Potter books.  That was a lot of fun; that went very quickly.

Thursday, October 15, 2009

MRI Friday

I am having an MRI on Friday to see what is going on with the tumor in the psoas muscle. Specifically, we are going to "rule out spinal cord compression."

I have been in low level pain for a week. At night, I can't lie on my back, on my stomach, or on my left side. Luckily, Advil and Tylenol have taken care of the pain for the most part, although I do wake up around 3:00AM every night in pain because at some point I rolled over into a painful position.

If I stand up straight, my pain level jumps from a dull aching 1 to a serious 4. So if you see me and notice that I am walking sort of slumped over to the left, that is why. Slumpy is comfy! [Oh, that is awful.]

The really great part is that when I am sitting in my ergonomic office chair at work, I am comfortable and nothing hurts. I forget about being sick, and I completely focus on work. As I have said before, sometimes I forget to go home! ;^) Thank God I do not have a job where I have to stand up straight.

Dr Reidel suggested that the pain might be radiation recall, which is when you have radiation followed by chemo -- and during the chemo, the radiation side effects (redness, pain) come back.

Easy Chemo was very easy today. We definitely killed some cancer cells today. I got another Aranesp injection (hemoglobin at 9.4). The best part was when my nurse teased the pregnant nurse who dropped my Neulasta shot, asking if she wanted to give me this shot too. I love the idea that I helped add a story to the Treatment Room folklore.

Wednesday, October 14, 2009

I Miss My Eyelashes

You never know how good you have it till it's gone. In this case, I'm talking about eyelashes.

Who knew eyelashes were so darned important?

Now that mine are almost all gone, my eyes are constantly irritated with dust and whatever other, um, irritants I don't even want to think about. So my eyes water a lot, which washes away any eyemakeup I put on.

Luckily I wear glasses, and you can't really see my eyes. Hmmm, you'd think my glasses would provide some dust protection. I must live and work in a particularly dusty environment.

My local news will be doing a report tonight on that new prescription drug that helps you grow nice thick eyelashes. The reporter said in a really ominous tone that there are side effects. I want to see this report. Maybe on Thursday I'll ask for a prescription. What's a few more side effects? I probably wouldn't even notice them.

Tuesday, October 13, 2009

Totally Hip

On the way to work yesterday, I called Chemo Nurse Marni and she actually answered her phone, so I didn't have to leave a message. That was excellent.

I reported my hip pain. I didn't take any Advil yesterday morning so that I would be able to characterize the pain for her. When I told her that, she immediately piped up with, "Let me ask you some questions about your pain," and we both started laughing like maniacs.

Anyway, the questions were great because I got to say NO to them, and they are the questions that would indicate that the nerves are involved with the tumor in the psoas. Like, "Do you have shooting pain down your leg?"

So now I am convinced that the pain is just the tumor sitting there whimpering and smoking and dying from all the chemo and radiation. That's nice.

I'm supposed to call back if it gets worse; otherwise just take notes about the pain and report to the doctor when I see him on Thursday.

This Thursday is Easy Chemo 6. We originally planned six cycles, so this might be the last one.

Tuesday, October 6, 2009

Waited Three Hours

I called the triage nurse yesterday just after 11:00AM to report that I was very dizzy and needed to hear back from them because this was a completely new and unpleasant symptom.

I had surfed the web a little and saw that dizziness is on the list of things you are definitely supposed to call your oncologist about. It can be caused by anemia, which of course I was just talking about yesterday.

Well, three hours later, I still had not gotten a call back from the triage nurse.

Lou said I ought to call Dr Reidel directly. It was surprisingly hard to do that; I had to psych myself up. I didn't want to bother him. That seems kind of funny now. Maybe it just goes to show how impaired my judgement was.

Anyway, Dr Reidel had given me the phone number to reach him directly, so I used it. When I explained the dizziness, he suggested that I might be dehydrated and told me what to do to fix it. He suggested that if I was not better in 24 hours to call back. He agreed that it might be my red blood cell count, but that we should rule out the dehydration first. That was good.

I immediately drank some grape Pedialyte (baby gatorade type drink). I found an unopened bottle in the fridge, leftover some "stomach upset" from weeks and weeks ago. Dear God that was so gross and sweet! (I bet babies love it though.)

I have not had any dizziness today, which is awesome. I am going to keep aggressively re-hydrating today.

Today I am not feeling that great. It's the flu-like symptoms from the Neulasta shot, I think. Some bones hurt and I am so weak. I was trying to fold sheets and I had to put them down because they were too heavy. (Yes, I was doing laundry. Yes, I iron my sheets. Yes, I am insane.)

Monday, October 5, 2009

Red Blood Cell Count Still Low

Remember two weeks ago, my red blood cell count was 9.8 (should be 12 to 15) and so they gave me an Aranesp injection to bring it up?

And they also suggested that I eat things like spinach and beans and liver? Yum! Which I did.

Last Thursday, when I got Super Chemo, I asked what my red blood cell count was. My nurse gave me the printout from my labwork. Sort of expected it to be up -- but the red blood cell count did not go up. The red blood cell count was 9.7.

Maybe it would have gone further DOWN had I not had the injection.

I have not really noticed any symptoms except on Friday I cut my finger, and it took a few minutes of applying pressure and elevating my hand above my head to get it to stop bleeding.

Turns out, I can get this Aranesp injection every three weeks if I need it. But I can have beans and spinach and liver (yum) more often than that.

I better surf the web and find out what else is good to eat for iron. I don't want to wear out these favorites. That is what I do: find a new favorite and eat it too often till I get to the point where I never want to see or smell it again. Broccoli. Salmon with mashed potatoes and brussels sprouts. Cream of Wheat, oh it was YEARS before I could eat Cream of Wheat again!

Oooh, we booked the cruise and started looking at shore excursions! That was fun!

Thursday, October 1, 2009

Christmas Vacation Approved!

Yahoo, here is what I found out today.

My next Scan Day will probably be November 4. That is the day when we will decide whether I will add on two extra cycles of chemo and whether I qualify for the clinical trial of the experimental drug to keep the cancer from starting to grow again.

Even if I add in the two extra cycles of chemo, I'll be done with chemo on December 3, and Dr Reidel says that is long enough recovery time to fly at Christmas. I can go on a cruise! And I will not miss any treatment to to do it!

If I do qualify for the clinical trial, then super luckily, the clinical trial is a daily pill that I would administer to myself with minimal side effects and monitoring that does not need to occur on a weekly basis. So I can do it while on vacation without putting anything in jeopardy.

Dr Reidel said that there is no strong evidence that the two extra cycles offer substantial benefit and that he is leaning toward my immediately starting the clinical trial instead -- if I qualify.

Of course I will certainly do the two extra cycles if he says to, but I will admit that I would rather be done with chemo after six cycles.

So, this evening Lou and I settled on a Princess cruise! We'll be on the fabulous new Ruby Princess which has [gasp] a SUSHI restaurant onboard. Imagine my excitement!

Hints About the Future

I haven't mentioned any of this to you yet, but last week Dr Reidel gave me some hints about what the future might hold for me.

I am in the middle of Cycle 5 of Gem/Tax, and we originally planned six cycles of Gem/Tax followed by another Scan Day. I think that puts Scan Day on November 5, 2009. Here's where the hints about the future come in, and they all depend on what we learn on Scan Day:

  • If I get significant shrinkage again, and if I can tolerate more chemo, we will add on two more cycles of Gem/Tax (6 weeks) in an effort to just totally beat the cancer down and take advantage of how well Gem/Tax is working.
  • If I get significant shrinkage but I can't tolerate more chemo because my bloodwork is bad or my attitude is bad, we do not add any any more chemo and instead go to monitoring on a two-month schedule. (What are the chances that my attitude will be bad?! Zip!)
  • Instead of monitoring, there is a chance that I can join a clinical trial of some drug they are testing to slow the rate of the cancer starting to grow again.  I did not get the drug name. I think Dr Reidel said it is a weekly pill drug with minimal side effects.  I know for sure he said that they already have eleven patients in this trial.  I said ABSOLUTELY YES I am interested.  I want anything they can give me.  We'll all just have to pray that I get the actual drug and not the fricking sugar pill!
  • If I do not get significant shrinkage, then I think we go to monitoring or the clinical trial. I think that you have to show that at least some improvement occurred between the third-cycle Scan Day and the sixth-cycle Scan Day to get into the clinical trial.

I am unclear of what happens if I add on two more cycles of chemo -- can I do the clinical trial after that?

It is totally okay that I do not have all the details at this point. This was just a preliminary chat about what might happen. I like that because it gives me time to adjust my thinking.

My big questions for Dr Reidel today involve VACATION PLANS. Lou and I are desperate to go on vacation. We get that week between Christmas and New Year's off, and we have been looking at ten-day Southern Caribbean cruises on Princess.

I want to find out today what the chances are for my being able to fly and cruise and snorkle and shop and nap in a lounge chair on the Lido Deck with a good book in my lap... If I am in the clinical trial, can the shipboard doctor give me the weekly pill? Is it possible to delay the start of the clinical trial? Should we book a cruise now or wait till Scan Day? Will I need sunscreen 200 SPF?

We love cruises. We basically check in to a luxury hotel, unpack once, and wake up every morning in a fabulous new place. We have been on twelve cruises so far and hope to go on many more, God willing. Our first cruise was to Alaska in 1997, which was our five-year delayed honeymoon. If you are interested, you can see pictures from all our cruises on


Saturday 10-31-09: Happy Halloween!

Friday 10-30-09: Woke up in pain from the bulging disc. My head was also ringing. I have to admit I was down in the dumps last evening; tired of not feeling good. But yesterday was a little better, and I hope today is a little better too.

Thursday 10-29-09: I guess to lie in bed for two days is not so good for a bulging disc!

Wednesday 10-28-09: Woke up in pain from both the bulging disc and all the bones in my back. Ate breakfast and went right back to bed. Pathetic! I would be happier if I had a good book to read. I am suddenly feeling dizzy and have the Unspeakable Side Effect, so I am headed back to bed. Later!

Tuesday 10-27-09: Dizzy this morning! Darn. Had a migraine after lunch. Spent the day in bed. Listened to the radio for awhile.

Monday 10-26-09: The low dose Advil regimen is really helping with the bulging disc! The left hip pain is greatly reduced. I feel pretty good right now. My ribs ache, my mouth is dry, my feet are numb, but I am NOT tired. I got a migraine yesterday afternoon, but the Immitrex stopped it in its tracks. It was amazing.

Sunday 10-25-09: Gosh I feel as though have been sleeping since Super Chemo on Thursday! I have been waking up at 9:00AM, taking long afternoon naps, and then crawling into bed completely exhausted at night. In the few hours I managed to stay awake, I had a lot of laughs with Cindy this weekend! What a great visit. Cindy drove us around, which was a super treat. Lou and I dropped Cindy off at the airport just before noon, grocery shopped, and now we are finally home. I am seriously ready to put my pajamas back on and go take a nap. Otherwise, I feel good! Just sleepy.

Thursday 10-22-09 Evening Update: Super Chemo went really well. They put me in a bed instead of a chair, which was just wonderful and comfy. My chemo was supposed to be at 12:30 but I didn't get called till 3:00 because they were really busy. I was reading a great book and did not get upset. It is what it is. Managed to keep ice in my mouth the entire hour of Docetaxel! Tomorrow is a vacation day, and Cindy arrives.

Thursday 10-22-09: Had a pretty good night's sleep with Ambien to counteract the 40 ml Decadron I had to take yesterday. (I am taking Ambien 3 nights out of each chemo cycle, and Lou has control of the bottle, because I have heard really bad things about sleeping pills.) Slept 6.5 hours; got up when when Lou's coffee maker started grinding the beans, hoped to bring him a cup in bed, but he got up too. Feeling pretty good. Time to go make breakfast!

Wednesday 10-21-09: Had to get up early today because Lou has a doctor appointment. Kind of nice when someone else is seeing the doctor! Started taking the Decadron today, so could not have my favorite mug of tea with breakfast. Decaf instant coffee for the next five days because any caffeine will make me MANIC.

Tuesday 10-20-09: Yesterday I had my three doses of Advil, eight hours apart, at 10AM, 6PM, and then 2AM. I've been waking up at 2 or 3 in the morning in pain anyway, so that third dose was no trouble. Today my Advil schedule is 7:30AM, 3:30PM, and 11:30PM. Feeling pretty darn good!

Monday 10-19-09: Feeling pretty darned good!

Sunday 10-18-09: Slept late again! Did not sleep well, though. Woke up multiple times in pain from sleeping in the wrong position. There is only one position where the hip does not hurt, and I can't seem to stay in that position when I am asleep. Feeling pretty good, otherwise.

Saturday 10-17-09: Slept really late! Lou woke me up at 9:00AM with a cup of tea in bed. I'm telling you, I'm married to the best guy on the planet. My hip pain is about half what it was on Thursday. Feeling really great, which is good because we have a big list of errands to do today.

Friday 10-16-09: MRI today at 11:00AM. I forgot to ask when I will hear the results! (Have not even had it yet, and I already want the results.) Woke up pretty early, WIDE AWAKE and feeling good. Got through a bunch of email at work. I actually got to exchange email in real time with a collegue in India! What a great way to start the day. My plan is to go to the office after the MRI.

Thursday 10-15-09: Easy Chemo today!

Wednesday 10-14-09: It is going to be in the mid 50s today! Time to break out some long sleeves, maybe a cardigan. I wonder how the wig will look with a turtleneck?

Monday 10-12-09: Slept till after 8:00AM this morning and woke up with sinus congestion, sore throat, and hip pain. I didn't post all weekend because my hip has ached all weekend, and I did not want to post that. Luckily, the ache goes away when I take Advil and/or Tylenol. This morning I will call my medical oncologist and report that my hip hurts. (My CyberKnife doctor said to call him if my hip started to hurt again, but I will start with my oncologist.)

Friday 10-12-09: Had a lot of hip pain last night, which I think must be from sitting on this uncomfortable wooden chair in my home office all week. Feel okay and plan to go in to work where I have a nice office chair waiting for me.

Thursday 10-08-09: Today I have the Unspeakable Side Effect, so I am working from home.

Wednesday 10-07-09: Got a migraine last night but Immitrex seemed to work okay. This morning I feel tired.

Tuesday 10-06-09: Yesterday went downhill fast with dizziness. Gosh at one point I was sure I was going to hit the floor; I just hung on to an inside doorway and waited for it to pass. Dr Reidel suggested that it might be dehydration so I aggressively re-hydrated yesterday and that has helped. So far today, not feeling like I am gonna pass out!

Monday 10-05-09: All done taking Decardon for this cycle! Looking forward to a really good night's sleep tonight. Plus I got to drink my regular caffeinated tea (with Splenda) at breakfast this morning. Have some bone pain and other yucky side effects this morning, so I am planning to work from home (in case in gets worse). But I am not tired at all and am looking forward to putting in a full day's work.

Sunday 10-04-09: Woke up a lot last night. Finally gave up trying to make myself sleep at 6:00AM. Feel pretty good this morning except ears are ringing and feet are numb. The bones in my upper back woke me up but Advil took care of that around 4:00AM.

Saturday 10-03-09: Slept till after 8:00AM this morning and feel very good so far. I am working remotely this morning; Lou is too, so the house is pretty quiet. Yesterday I was tired. I had my Neulasta shot and headed home to collapse on the couch. Really liking the new Flash Forward TV show.

Thursday 10-01-09: Late update: Came home from Super Chemo very happy but very tired. Dragged around so sleepy and then around 8PM WOKE UP just when I should have been crawling into bed. I hope I can sleep tonight.

Thursday 10-01-09: Welcome to October! Gosh this year is flying by! I woke up every 90 minutes last night and finally gave up trying to sleep at 4:30AM. I read Harry Potter book 5 for awhile, puttered around the house, and then made Lou an awesome Maltby Cafe stype potato/egg/cheese breakfast. I feel very good and look forward to SUPER CHEMO today.

Tuesday, September 29, 2009

Balancing Act

There is a pink spiral calendar notebook that lives on the kitchen table. It's where I keep track of my side effects and solutions and appointments and drugs.

It's really helpful, mostly because the process of writing down a symptom and solution makes it so much easier to remember what to do the next time that same symptom shows up.

And some of the side effects snuck up on me -- I didn't realize what they were till I looked at the notebook and saw the pattern.

Lately I have been wondering about the impact of expecting certain side effects to occur. I am not afraid that I can make them happen -- it is more like, I do not want to waste any time worrying about side effects that could happen again.

Yet, there is some value in planning ahead. It is a sort of balancing act, trying to be ready without worrying.

Here is what I mean. Last time I got Super Chemo, a few days passed and then I had two migraines and flu-like symptoms and spent 2.5 days in bed. That was my worst week yet. (The great thing is, my "worst week" was not that bad! I feel pretty lucky that chemo has not been very difficult at all and yet is killing the cancer. Thank God!)

Anyway, this Thursday, I am getting Super Chemo again. So, next Monday through Wednesday, I might feel lousy again. I have noticed that I am not agreeing to do anything extra (important meetings at work, dinner plans with friends) on those particular days.

I think it is smart to be ready in case those days are not good.

I just don't want to worry about it from now till then.

So if I catch myself worrying, I will just remind myself about my Significant Shrinkage and let myself be flooded with the inevitable JOY and RESOLVE that comes every time I visualize the tumors shrinking and smoking and whimpering under the onslaught of the chemo.

I am reminded of: "Hope for the best, plan for the worst, and expect nothing."

Friday, September 25, 2009

Low Red Blood Cell Count

Nurse Amy, whom I think is awesome, was my nurse yesterday.

I got Easy Chemo as planned, but in addition I also got an Aranesp injection to boost my red blood cell (hemoglobin) count. My HGB was 9.8 when it should be 12 to 15.5. When Nurse Amy came over with the injection, I thought she was trying to give me the Neulasta injection, which should not happen till next Friday. She explained that we need to boost my red blood cell count. She also gave me a printout of my lab results, which was super cool not that I know how to interpret the 30+ things on the printout.

Aranesp comes with a pretty nice handout. Nurse Amy also talked about how I ought to be eating things that will boost my iron. So on the way home I stopped at a Harris Teeter and got liver. I really like liver!

I have seen Dr Reidel eleven times. One time was when we met for my "second opinion" to review my case and switch me over to Duke. Ten times were for chemo; and eight of those times, I first got a nice long satisfying chat with some random oncology resident who was assisting him. These residents asked a million questions and recorded my answers and all my side effects and passed along the high points to the doctor. (I never realized till now how satisfying it is when someone writes down everything you say!) I know either they or he filtered my info because Dr Reidel would later come in and focus on the important one every week.

The last two visits, however, there has been no resident to chat with. I really miss that! And Dr Reidel does not want to chat. He asks for what's most pressing. As he left the exam room yesterday, I felt vaguely disappointed and unfulfilled. It wasn't till much later that I realized how much I miss his parade of residents.

Ho, but later on, I got plenty of chatting! (People always say be careful what you wish for.) In the treatment room, I sat next to a lovely couple (Chris and Eva ) and chatted with them almost the entire time I was there. He was a "biological" patient -- not a chemo patient -- and she was crocheting and keeping him company. They live like three miles from me!  They sure helped make the time fly by.

Usually, my neighbors in the treatment room simply nod a friendly hello and then ignore me for the rest of the time. That is okay, too, because I bring a book, and my rosary, and my Tetris and just totally entertain myself.

Sunday, September 20, 2009

Go Take a Walk

One of the handouts from Duke says if you are feeling really tired, the best thing to do is to get some exercise every day, and you will start to feel better.

So, for the last five days, I have made myself take at least a short walk with Samantha the Golden Retriever. My house is at the bottom of a hill where two roads sort of dead end into each other, so there is this perfect short walk where I go up the hill, across a flat top part, and then back down the hill to my house in one loop. It's just one block, but it is perfect.

I sort of have to drag myself up the hill. My legs are so tired, right from the start. It wasn't like this before chemo. I liked walking up the hill fast.

It's an interesting walk because there are two houses under construction, and that is fun to watch. Although, they have both progressed to the point where most of the outside seems to be done and the interesting work is all going on unseen inside.

There are still a lot of empty lots for sale in the neighborhood. Those lots are all overgrown and fascinating to Samantha. So we both have a good time. Plus, if Sam poops in a wild lot, I don't have to pick it up.

Plus, my neighbors are all really nice. A couple of weeks ago, I came home with a huge bag of tomatoes. Awesome.

Today Lou took Samantha for the short one-block loop, then dropped her off at the house and then we went for a longer walk up by the driving range and the tennis courts and pool. The pool closes after today, I think. We still have never gone swimming there. Next summer for sure.

We had to stop a lot during the walk either because I was tired or out of breath. At one point, Lou suggested that I STOP TALKING because we were halfway up a huge hill, I was gasping for breath, and I was only halfway through some story about work.

Thursday, September 17, 2009

Migraine Experiment Continues

Since 2004, I had had maybe four to six migraines per year. They are not that bad, lots of sparkly lights, bad headache, difficulty speaking for about an hour, waste of a day. From what I have heard, that is not too bad.

But during chemo, yikes! That number has jumped. (I have gotten a migraine on both of the last two days.) So my primary care physician gave me a selection of migraine drug samples to see whether we could find one where I can stay upright and functional instead of having to go to sleep.

All of these drugs work different for different people, so the point is to find one that works for me.

Excedrin Migraine: This is what I have always taken at the first sign of blank spots. I basically rush home and go to sleep for a few hours to escape the pain, but then I am okay.

Treximet: I remember that I was not really impressed; it did not seem to be any better than Excedrin. I definitely went to sleep, but I am not sure if I tried to stay awake. Might be a good idea to try Treximet once more and take notes.

Relpax: Got rid of the sparkly lights very fast, but about 45 minutes into the headache, my head HURT a lot and I was actually nauseated. (Months of chemo, and it takes this migraine to nauseate me!) Almost exactly two hours into the headache, the sparkly lights came back. So I ended up in bed after all.

Frova: The sparkly lights lasted an extra long time and made it impossible to see anything. I never could have driven the car like that. However, for a few hours, I felt pretty good, minor headache only, able to watch TV. But five hours later, the entire headache came back. Sparkly lights followed by lots of pain. I took a second pill. I ended up in bed to escape the pain. Then later I was groggy. 

Immitrex: The sparkly lights were very short lived. The headache pain was moderate. I could not read. It was best if I went to sleep. I could not have stayed at work through the migraine.

Maxalt: The sparkly lights lasted for the usual 20 minutes, but then no headache followed! I was almost perectly fine. I had a MINOR headache (more like a hint of a headache). I definitely could have stayed at work! Fantastic! No wonder this stuff is so expensive. (Updated June 2010)

Monday, September 14, 2009

Cars from All Over

Because I got the Super Chemo on Friday, today I had to run up to Duke for my Neulasta shot.

Whenever I pull into the parking garage there, I am surprised at the license plates on the other cars: Massachusetts, California, Virginia, West Virginia, Georgia, I forget the rest. Duke is an amazing place and people come from all over to get care there. I feel so glad that I switched over. I have these peace of mind that I am in the right place, being part of the Bone and Soft Tissue Sarcoma Center.

I mentioned to today's nurse that last time around, the syringe got dropped, and she laughed and said that they gave that other nurse such a hard time for a week afterward! Nothing got dropped today. But no tickling and no pinching, either. It didn't sting till she pulled it out though. Strange.

I should be washing my wig tonight but I am just not really up to the effort tonight. If you see me tomorrow, try not to notice the messy hair.

I haven't mentioned it, but I have been enjoying reading The Age of Wonder. I am in the middle of the chapter about how balloonists got started in the mid 1700s in France with paper or silk balloons filled with hot air or hydrogen. Everyone was so excited about it, but the English were skeptical and called it the French Folly. Benjamin Franklin worried that there might be military applications, so that troops could float over and drop down on the enemy or view their encampments... so interesting.

Today I had my last dose of Decadron, so I am hoping for a deep uninterrupted sleep tonight and the thrill of a real cup of tea tomorrow morning.

Rosary update: I have completed one novena to thank Mary for my significant shrinkage, and I am a couple days into one to thank St. Jude. After that, it is St. Peregrine's turn and then I will be complete.

Friday, September 11, 2009

Nothing to Worry About

Yesterday when I saw Dr Reidel, I asked about the other medical conditions that were "noted" in the preliminary report from the CT Scan. I had googled each one, and to me they sound awful. I admit that I have kept these other things to myself all week because I wanted us all to bask in the golden glow of Significant Shrinkage. Didn't want anything to tarnish that joyous news.

I'll tall you right up front that Dr Reidel says that I have nothing to worry about for any of these medical conditions. I'm just posting them here for full disclosure ;^)

Here are the other medical conditions noted in the preliminary report:

  • Small pericardial effusion (a very little bit of fluid collecting around the heart)

  • Diffuse hepatic steatosis (fatty liver)

  • Postoperative changes of ventral hernia repair (what's up with my incisional hernia repair?)

But the doctor said those are "nothing to worry about." Basically, when they review the scan, they have to note everything they see but do not include any kind of value judgement or attempt to put it into context (like, "This is expected during chemo" or "Whoa Nelly what the heck is that doing there?!") I'm cool with that. [Patsy, are you cool with that?]

Plus I have had hip pain in my right hip for like two weeks. (I had hip pain in my left hip for months and did not even think to mention it and lo it was a tumor in my psoas muscle! So now I mention everything that hurts or twinges.) But when Dr Reidel checked the final report from the CT Scan, there is nothing happening there. He suggested that it might be "referred pain" from the arthritic changes in my back. The hot tub does make the right hip pain go away.

Wednesday, September 9, 2009

Vitamin D Deficiency

This spring, everyone in my vanpool was talking about being tested for Vitamin D deficiency. Nobody spends any time out in the sun anymore, and when we do, we are all slathered up with sunblock, so people just aren't producing Vitamin D the way they used to...

The vanpoolers who were deficient said how great they felt after they started taking Vitamin D. Mostly they felt energized and cheerful. Who doesn't want to feel more energized and cheerful? Especially during chemo!

So in mid-August when I went to my primary care physician for migraine drugs and antibiotics for my head, I also asked if he would test me for Vitamin D Deficiency. The doctor and nurse both chuckled and said that practically everyone who comes in wants to be tested for that. It is the new popular health issue to worry about. The doctor said he would be happy to test me, but that most people who ask end up not having a deficiency. I guess if you are actually deficient, you show up complaining about the symptoms, and the doctor suggests that you get tested for this deficiency.

Well, turns out I am deficient. The results showed me scoring like a 16.8 when the normal range is 32 to 100. So I got a prescription for 50,000 IU of Vitamin D to be taken weekly for 12 weeks. When I filled the prescription, the bottle contained six pills, which seemed so strange to the clerk and I that we checked with the pharmacist. Six pills was correct because this is something you take once a week.

I have been taking it for five weeks now. I know this because I was filling up my pill box and saw that I need to refill the prescription.

That started me wondering whether I feel more energized & cheerful. Ten weeks into the chemo, I would have to say I have less energy than before chemo started ;^) Probably, I would be even less energized & cheerful than I am today if I were not taking it.

I am naturally pretty cheerful and upbeat anyway. If I got any more cheerful, you might start to wonder if it were artificially induced. But it isn't. Unless you count chocolate.

Thursday, September 3, 2009

Significant Shrinkage!

Let's all do the happy dance!

The preliminary report on today's CT Scan shows "significant shrinkage" in the tumors, which is absolutely the best news that I could have hoped for (short of a miraculous total disappearance of the cancer but let's not get greedy!)

Here are some details from the preliminary report:

  • There are no new nodules in the lungs!

  • The 1.3cm lung nodule shrank to 0.9cm.

  • The 0.9cm lung nodule shrank to .5 cm.

  • The 6mm lung nodule shrank to 2mm. (There are six nodules but they only measured three representative ones.)

  • The mysterious 4cm x 4cm "solid mass" in the pancreas shrank to 3.0cm x 2.5cm!

  • The 4cm tumor in the psoas muscle did NOT shrink. It stayed the same. I am thinking it is so messed up from the Cyber Knife radiation that even this fabulous chemo cannot make it shrink. Oooh, and there are NO new bony abnormalities where the tumor is eating into L4.

Yahoo! Such fabulous news! So we stay the course. I do three more cycles of Gem/Tax, which will take nine weeks. Then we do another scan.

Knowing that there has been significant shrinkage makes it so much easier to get the chemo and laugh at the side effects!

Thanks everyone for all your prayers and good thoughts and comments and email.

I said the rosary every day for the last 15 days asking for help. I also prayed to St. Jude, the patron saint for lost causes, and St. Peregrine, the patron saint for cancer survivors. And of course today I started a novena to thank Jesus and Mary for their help.

Sushi tomorrow night!

Today is Scan Day!

Here is the plan:

7:00AM Karen and Lou leave the house
8:30AM Labwork
9:30AM CT Scan with contrast
10:40AM See Dr Reidel, get results
12:30PM Chemo

Check back later for the results.


Wednesday 9-30-09: I'm taking Decadron today in preparation for Super Chemo tomorrow. I slept 8.5 hours and feel fine this morning.

Tuesday 9-29-09: Today it will be a beautiful Fall day in the low 70s. My sore throat is gone! I wonder how my red blood cell count is doing?

Monday 9-28-09: From the head cold: still have a sore throat but feel less miserable than yesterday. From the chemo: the bones in my shoulders and upper back hurt.

Sunday 9-27-09: Miserable head cold.

Saturday 9-26-09: Went for a 2 mile walk this morning! Had to stop and rest a lot, but it was a great walk. Feeling good today.  Off to the grocery store and coffee shop now...

Friday 9-25-09: Wide awake after seven solid hours of sleep. Sore throat again. Took an Airborne fizzy pill this morning.

Thursday 9-24-09: Woke up with some kind of cold! Sore throat, stuffed up, blah. But today is Easy Chemo Day and I am going to Duke to kill some cancer cells even if I have to bring a box of tissues with me. Oooh maybe they are going to make me wear a mask!

Wednesday 9-23-09: Maybe 8 hours of sleep is not enough! Feel kind of achy with upset stomach this morning. But I am ironing my khakis and headed for the vanpool.

Monday 9-21-09: Plan to take the vanpool today, so I am up early. Feel pretty good, considering that it is 5:40AM on a Monday.

Sunday 9-20-09: Feel good again today. Went for a long walk with Lou. Had to stop often to rest, but it was an awesome walk.

Saturday 9-19-09: Feel good again today.

Friday 9-18-09: Woke up feeling totally fine. Yahoo!

Thursday 9-17-09: Still have flu-like symptoms but no migraine yet!
Hope to work from home today.

Wednesday 9-16-09: Evening Update: It is just after 5:00PM and I am finally feeling almost human. I go another migraine this morning! And another day of flu-like symptoms. If we stick to the pattern, I can expect a happy healthy day tomorrow though.

Tuesday 9-15-09 Afternoon Update: Gosh, around 8:00AM my day went to hell! Got a migraine right after I left for the car dealership. I am still trying a variety of migraine drugs, so this time it was Relpax. Took it in the car and foolishly kept going; not such a great plan. Got rid of the sparkly lights pretty quick, but left me with a terrible headache, worst yet. I successfully got the car serviced. Finally got home and went to sleep from about 11:00Am to 1:30PM. Woke up with migraine gone but replaced with achy exhausted flu-like chemo side effects. I decided to spend the day in bed. So tired I can't sleep or read or watch TV. Pathetic! But thank God no barfing! ;^)

Tuesday 9-15-09: Woke up at 3:30AM! Feel pretty darned good however. Worked for three hours, which is nice.

Monday 9-14-09 Evening: Tired today, with one numb foot -- and aren't those lovely side effects?! I feel so lucky. Based on the previous cycle, Tuesday and Wednesday of this week might be tougher. Tonight I had a Healing Touch appointment with Amelia and left feeling FABULOUS.

Sunday 9-13-09: Feel fine so far but going to try to take it easy today. I do want to accomplish two things: grocery shop this morning, and go to dinner with a big group from the neighborhood tonight.

Saturday 9-12-09 Late Morning: Had a busy day planned today, but we have already had to cancel the BBQ lunch & live music at Big Boss with Woody and Meredyth because I am too tired. Still planning to visit the lovely couple who lease our old house.

Saturday 9-12-09 Early morning: Jumped in the hot tub this morning and enjoyed the 101 degree heat and blue skies overhead. Busy day planned today. Visiting the lovely couple who lease our old house, maybe meeting a new baby in the old neighborhood, than heading out to Big Boss for BBQ lunch & live music with Woody and Meredyth. Tonight I'll go for pizza with my pals in Holly Springs. Feeling good! But ready to bail out of our plans if I start to feel wonky...

Friday 9-11-09: I cannot write that date without feeling sad about what happened but proud that we have thwarted further attacks within our borders. I get Super Chemo today instead of yesterday because the Monday holiday threw off the regular schedule. Let's kill more cancer cells today! Decadron woke me up at 4:30AM filled with energy. I saw that Lou had slipped away to the guest room to escape my snoring. That made me feel bad so I went to the Harris Teeter at 5:00AM to pick up smoked salmon to go on the poor guy's bagel for breakfast today. [I tell you the good things I do for him but hardly ever mention how I drive him insane.] I am having SUSHI LUNCH with the fabulous Deborah A !!! Sushi alone is a thrill, but sushi and time to chat with Deborah is a super thrill. I'll tell ya, I am a lucky lucky woman.

Thursday 9-10-09 Evening: I was super busy with urgent deadlines from 9:00 to 1:00 at work, which I perversely enjoy. Then I headed to Duke for my regular labwork and doctor appointment which occurs before chemo. (Super Chemo tomorrow.) I crashed at 3:00PM and struggled to stay awake in the waiting room because I was afraid I would miss my name being called. Once I got into the exam room, I stretched out on the exam table for a nap and was just about to drop off when Dr R arrived. All is well! Planning to crawl into bed at 7PM tonight when Lou leaves for poker with the guys.

Wednesday 09-09-09 Night: I got a flu shot this morning and got to work pretty late, feeling tired and cranky. But I got my second wind after lunch, started feeling wonderful, and worked till 8:00PM. What an awesome day!

Wednesday 09-09-09 Morning: INTERESTING DATE TODAY! I woke up dreaming I was Kevin Costner's character with the webbed feet in Waterworld. My feet were stinging and burning. (I really disliked that movie.) Slept late (till 7:30AM) in the hope that I will not crash at 3:00PM again. I have an important meeting at 3:30PM that I need to be able to think during ;^)

Tuesday 9-8-09 Evening: I crashed at 3:00PM, left the office at 4:00PM, and then slept till about 6:30PM and now feel just fine. I woke up just in time for a wonderful chicken dinner from Carol and Linda, including a fresh peach tart that blew us away. Then we went for a walk and finally met our newest neighbors up the street.

Monday 9-7-09: Happy Labor Day! I am shocked that it is Labor Day already. What happened to my summer?! Oh yeah, I was busy getting radiation and chemo. April seems like a million years ago. So much has happened since Chemo Nurse Ann called and said, "There is a spot on your x-ray they are not happy with." But we have had some fun this summer. We took trips to both Charleston, SC, and to Kitty Hawk, NC.

Sunday 9-6-09: Slept till almost 9:00AM! Feeling pretty good. Bottoms of my feet are numb. Went for a short walk with Lou and Sam. Planning to go to the Bavarian Brathaus this evening with John and Pat. Still feeling so lucky and happy and relieved at the good news.

Saturday 9-5-09: Got up at 8:00AM and found Lou in the hot tub. What a great way to start the day. Lots of golfers out early today. At one point there were four golf carts piled up at the 5th tee. Went for a short walk with Lou and Sam, dropped off Sam, and then walked out to the front gate of the neighborhood. Got to do something to combat the weight gain from Decadron. I have put on 10 pounds in 10 weeks of chemo. Darn. But who can complain since it is working so good! :^)

Friday 9-4-09: Wow, slept great, feel great, nothing more therapeutic than fabulous news. I must not have been snoring because Lou did not slip away to the guest room in the middle of the night to escape the racket. Yesterday we were trapped at Duke because waiting for both the CT Scan and the Dr R appointment took forever, so we had to cancel our generous dinner delivery from our neighbors Carol and Linda because we did not think we would be home in time and we did not want to be worrying about them all afternoon. Last night I had some bathroom trouble but caught it early and feel fine today. I have not ironed in like two weeks and thus have nothing to wear to work. Lou is taking today as a vacation day.

Thursday 9-3-09 evening: SCAN SHOWS SIGNIFICANT SHRINKAGE! Later tonight I will post more details. Thanks everyone for your prayers and good thoughts!

Thursday 9-3-09 morning: Happy Birthday Mom! I have the best mother in the world, and today is her special day. I just hope her present arrives in the mail today.