Sunday, January 31, 2010

Please Stop Talking Now

Taking prednisone has been interesting. It has kept me awake every night and made me energetic during the day. Lou has been reaping some benefits because I have been eager to run down to the fridge in the garage to get him a can of soda, or to run upstairs to put things away, or to do the dishes... none of which activities I am usually thrilled to do.

I have four days left on this prescription, but the dose is getting pretty low. For the next two days I take one pill twice a day, and then for two days I take one pill once a day, and then I am done. (My asthma seems improved, but I will have to check my peak flow later to get an accurate measurement. I still have alittle cough though.)

Last night was a little strange. At about 7:00PM I just totally crashed and was falling asleep on the couch. So I dragged myself off to bed at 8:30PM and slept great with no cheminal intervention till 5:00AM this morning when I WOKE UP and then accidentally woke up Sam and Lou, too, when I blundered off to the bathroom in the dark.

So now we are all up! Not our usual Sunday morning routine. Lou usually gets up at 7:00AM and has a couple of hours of peace and quiet alone with Sam before I finally wake up and join the party.

I made myself a cuppa and pressed the button on Lou's beloved coffee maker. Then Lou suggested we look at pay-per-view channels to see if we could fins a movie to watch, but I guess I am just a little too energetic and loud this morning because after I excitedly read out loud the descriptions of about eleven movies, he asked me to please stop talking till he had a little more coffee in him ;^)

So, now I am blogging in my office, and he is watching an old Star Trek TNG quietly by himself. (Have I mentioned lately how much I love my laptop? On Friday I sat in my LazyBoy all day, with my swelling ankles elevated, and with my laptop logged on to work. Heaven! WiFi gives me the freedom to go anywhere in the house to work, but right now I am tucked away in my office where I wouldn't be tempted to keep talking at the poor man.)

I think we are watching Pelham 123 (Netflix) and Whiteout (PPV) today. Plus I am planning to iron and maybe log on to work to see if anyone answered any of the questions that I emailed on Friday and Saturday. Another lovely day.

Has anyone seen District 9? We like alien movies but aren't sure if we want to pay to see it.

Friday, January 29, 2010

Jumped from 350 to 390

Today is day three of taking Prednisone for my asthma.  Five days to go. This morning I took my first reduced dose. If you're not familiar with it, Prednisone is soemthing that you start with a higher dose and gradually work your way down to nothing.

I just checked my peak flow, and it has improved from 350 to 390!  (425 is my normal score.) Nice improvement.

Plus my coughing is virtually gone. Oh except when Bonnie, my neighbor at work, IM'ed me that she couln't hear me coughing any more, and then she IM'd something funny, which made me laugh -- and then I started coughing ;^)

The Prednisone is a steriod, but it didn't occur to me that it would affect me like the Decadron did this summer. It wasn't till I was just lying there in bed INEXPLICABLY WIDE AWAKE on Wednesday night I realized it might. Decadron kept me up all night too; it also made me crazy chatty and turned my face red.

This week I have the insomnia and the red face, but I do not think I have been crazy chatty. I'm sure that you will let me know if you disagree ;^)  I have been pretty energetic, however. Last night I stayed at work till almost 9:00PM, and while I was compiling my project, I went to YouTube and played the Big Bang Theory theme song and danced around my office.  Good thing I have a door.

My plan today is to work from home. We're supposed to get snow tomorrow night.

I'll be on the phone from 9:00AM to 12:00PM listening to a training presentation.  Poor Lou won't be able to get any phone calls from work during that time period.  Nothing but peace and quiet for him, so he's heartbroken. Hmmm, if I play music and dance around my home office, I hope it doesn't bother him, hut his office is way at the other end of the house and up a flight of stairs.

Tuesday, January 26, 2010

68% Ain't Good

Oooh, it is worth it to go to an actual asthma doctor when your asthma is flaring up!

I had my lung function tested, and I scored 68%, where 100% would be normal. Lou pointed out that a 68 would get me a D if this were a real test.

I also did a peak flow (which is where you take in a big deep breath and then blow out as hard as you can in one big puff). My score was 350 (my normal is 425).

The only thing they did not do, which my old asthma doctor in Seattle always did, was make me blow my nose in some Saran Wrap (instead of Kleenex) and then look at the results under the microscope.  That is one test I do not miss.

The doctor asked a million questions and then made three suggestions:

  • that I stop using my nebulizer (because I do not feel that it is helping)
  • that I take a short course of prednisone (because I have been coughing far too long)
  • that I use a stronger dose of Advair for one month only

Tomorrow morning, I start the prednisone. I will probably start feeling a lot better really quickly. I am really looking forward to not coughing. I would do the happy dance but dancing makes me cough.

Lou Remembers Everything

Lou is so darned organized. Yesterday morning I asked, "Didn't I go to an asthma/allergy type doctor about two years ago?" And within two minutes he had the doctor's name, phone, and address. And I thought it was good that I even remembered seeing an asthma doctor two years ago. So I called the office and got an appointment for this afternoon. I am hoping that there is something we can do to stop this cough.

As for the tender spot above my port, Dr R suggsted that, since it is getting better, we just wait and see what happens. That was good news for me -- I didn't really want to leave work and go to Duke. Too much work to do! But I knew that it was important enough to report.

That's all the news for now.

Monday, January 25, 2010

Calling the Doctor Today

After all my talk yesterday about not being sick anymore, it is sort of funny to report that today I need to call the doctor.

There is a red, tender spot above my Power Port, along the tube that goes from the port to my jugular. It has been red and tender for two weeks, and it was very uncomfortable on Friday and Saturday but much less so today. It is NOT warm to the touch, which would indicate an infection. Anyway, I think that I had better call and report this to my oncologist's nurse and see what she says. I have never had any trouble with my port; I am really glad I got a port because it made chemo much easier to deal with. Plus, I always think of it as my Borg* implant.

There is also the matter of this cough that won't go away. I've seen my primary care physician twice. Today I am going to try to get an appointment with an actual asmtha doctor. My asthma is definitely acting up. But my friend Barbara told me that she coughed for like 6 weeks too, and that was a virus. So maybe it is a virus that has irritated my asthma.

I'll let ya know what happens.

* That is a Star Trek reference, not something you can buy at IKEA.

Sunday, January 24, 2010

Forget About It

Lou and I had some wonderful long talks while we were on vacation. One of the things we talked about turned into a New Year's resolution for me: to change my attitude so that I no longer think about myself as a sick person.

Okay, some of you are thinking, "But, Karen, you are such a sick person."  Yes, I know, but that is not what I mean.

Here is what I mean:

  • When we start talking about a fabulous trip somewhere next spring to celebrate my parents amazing 50th wedding anniversary and I secretly worry if I will be okay to travel or if I will be on chemo again. What I need to do is just plan the trip and assume that I will be fine. If I am not fine, we'll deal with it then -- that is what cancellation policies are for. No reason to worry about it.

  • I still have not started going back to the YMCA to work out. I know I should be working out because I will feel a lot better, have more energy, and get rid of this stiffness. Being sick gives me permission to be lazy! During chemo, when my immune system was really compromised, it would not have been a good idea to go to the YMCA and be amongst people and their germs. But I am not on chemo now. I actually feel pretty good! I still have to get eight hours of sleep, and I am struggling with swollen ankles every day, but those are minor problems.

I am not suggesting that I can completely forget about having cancer. I do have doctor appointments. I am still practically bald. And five days a week, I still have to take refridgerated clinical trial pills in the middle of a four-hour block of time during which I consume only water. (Trust me, that does not happen naturally.) But I am always happy when I take the pills. I still feel a little thrill of luck and triumph because I am sure that these are the real drug, not the sugar pill.

I just need to keep reminding myself how good I feel. And I need to drag myself to the YMCA.

Sunday, January 17, 2010

Other pictures from the Cruise

The guy on the left is my fabulous wonderful husband. We are in Grenada, the isle of spices.

Here we are on a cliff on St Thomas.

A very nice English lady took this picture for us. Then I was supposed to take her picture with her husband, so she gave me her point-and-click type camera. But I could not make it work!  I aimed it, pressed the button, heard a click -- but no picture!  We tried three times, no joy, and then it was time to get back on the bus. At the next stop, she found someone else to take their picture ;^)

Pictures from New Year's Eve

This morning Lou and I went through the pictures from the cruise. He will eventually publish all of them to our website with all our other vacations.

I picked a couple of pictures to post here.

Lou and I wandered around the ship during the day on December 31, 2009, to see the preparations being made for the various New Year's Eve parties. Once we saw these balloons, we knew which party we were going to.

Here is the view looking up from Deck 5, where the dance floor is. This area is called The Piazza. It is a big open area 3 decks high with lots of shiny brass and marble.

Here is a sideways view, from Deck 7.

Here we are at dinner on New Year's Eve, all dressed up. We ate in The Crown Grill, which is a steakhouse on board the Ruby Princess. It was awesome and romantic.

Saturday, January 16, 2010

They All Died

Lou and I met a lot of people on the cruise. It is fun to sit down next to someone and have a nice chat and find out where they are from and where they have travelled to. Even when we end up sitting with people who are having a miserable time, we still have a good time because we laugh about it later and tell each other we are glad that we are having fun.

Well, there was one conversation that really upset me on the cruise.  I had been standing alone by the rail on the Promenade Deck late one afternoon, watching the ship prepare to pull away from the dock on one of the islands. (Lou was walking laps around the deck.) A little crowd of ladies wearing a lot of perfume joined me at the rail, and I had to escape because the scents were irritating my cough.

So I went and sat upwind of them, next to some guy. We were talking about perfume and stinky candles and potpourri, when his wife joined us. The whole time, I am coughing this dry little asthma cough. We were having a great time till she asked about my health. Once I verified that my lovely hairstyle was the result of chemo, she started to tell me stories about everyone she knew with cancer. The problem was, everyone she talked about had died.

By this time, Lou had joined us, and I shot him this amused look like, can you believe this lady?

But what got me was when she started talking about this woman she knew who had a little dry cough that would not go away. (I am still coughing as we sit there.) The woman eventually goes to the doctor and finds out that she has lung cancer and is dead soon afterward.

I am trying to be polite, but now all I can think of is that my cough is not asthma at all -- it is the cancer and soon I will be dead too. Her husband was looking at her with this horror-struck expression, as though watching a train wreck in slow motion. At this point, even she seemed to realize that her long list of dead friends was probably not what I wanted to hear about.

So, I made a big show of looking at my watch and exclaimed that we had better get moving if we wanted good seats for the comedian, and Lou and I took off. We kept running into them for the rest of the cruise, but we always seemed to be rushing off somewhere else, no time to chat.

Gosh, I had forgotten all about this until I heard that my CT Scan showed that none of the tumors grew. Some little part of me had been secretly worried about my persistent cough. Very happy to report that it is just asthma.

Thursday, January 14, 2010

No Growth!

I'll start by telling you that the CT Scan today showed no growth at all. All eight tumors stayed the same! Yippee! So, not only am I positive that I am getting the real clinical trial drug, now I am also positive that it is working.

This was a long day, though. I had labs at 10:00AM, CT Scan at 11:00AM, and then an appointment with Dr R at 2:30PM. My plan had been to sneak out after the CT Scan and go for sushi at the awesome place down the street where I had sushi with Deborah... but a nurse convinced me to take a beeper and stay in the building somewhere because she would try to get me in earlier than 2:30PM.

Well, that did not work.

The beeper never beeped. Around 4:30pm, Dr R's nurses found me stretched out on a padded bench in the corridor outside of Clinic 1A, reading. We chatted about my fabulous vacation as well as the three trips one nurse made as a high school missionary doing construction work in Haiti, Egypt, and Peru. Eventually we got down to business and I answered all their questions about how I have been feeling and what drugs I am taking.

I saw the doc himself at just before 5:00PM -- and that was when I finally got the good news about the CT Scan. I have to admit, however, that when the nurse brought me a fresh supply of the clinical trial drug at 4:30PM, I stopped worrying about my CT Scan results because I figured that they wouldn't be giving me more of the drug if my results were bad. (They told me that if there is any growth, I get kicked out of the study.)

I can understand why they were running so late today. Every waiting room was jam packed with people. It was CRAZY today. With Martin Luther King Jr Day on Monday, lots of doctors needed to see their Monday patients today.

Basically, I hung out at the hospital doing nothing from 12:15PM to 4:30PM. When I say "doing nothing," what I mean is getting progressively more worried about the results of the scan :^)  I also ate lunch, wandered around the building, sat outside in the sunshine till I got cold, finished reading Spare Change by Robert Parke. and started reading The Pale Horse by Agatha Christie novel.

I picked up hot and sour soup for dinner on my way home.

One hour till I can take my pills and go to sleep!

Wednesday, January 13, 2010

Good Night

Taking the clinical trial drugs at 10:00PM is so much more convenient that taking them at 10:00AM. I don't have to drag them back and forth to work in an insulated ice pack, which is nice. They can just stay in the fridge at home.

Perhaps more importantly, when I get to work, I can have a cup of coffee to jumpstart my mental processes. When I was taking the pills at 10:00AM, I couldn't have anything but water. Water doesn't jumpstart anything except maybe a trip to the rest room.

Tomorrow I am having a CT Scan. We'll see how well the clinical trial drug is working.

I also got a letter from UNC asking me to come back for a followup after my CyberKnife radiation surgery. I made an appointment to see Dr Morris at the end of this month. I am looking forward to telling him about how the tumor in the psoas shrank so significantly and then later how my psoas tightened up so that I could not start up straight.

Sunday, January 10, 2010

Lavendar Epsom Salts

At least two people told me to soak my feet in epsom salts to help relieve the swelling. I don't remember who suggested it first, but today my sister-in-law, Lynda, suggested it while I was sitting in the parking lot outside of the Rite Aid. Perfect timing; no opportunity for me to forget.

I bought lavendar-scented epsom salts and then came home and used them for a long hot soak. What a difference it made! I had ankle bones again! I had slender feet! Plus I smelled nice!

But it did not last.

Standing around barefoot ironing all afternoon clearly hastened the re-swelling process. In retrospect, I wish I had pulled on some compression stockings after the soak. But at least I have a new way to combat the swelling.

Tomorrow is Monday and my vacation is over. I'll be heading to work, I hope in the vanpool. Toward that end, I'll be going to bed soon so I can wake up at 5:30AM.

At this point, my plan is to go bare-headed to work. I have salt and pepper peach fuzz, still pathetically short but at least with no more freaky shiny bald patches. (I just can't deal with the wig any more.)

Friday, January 8, 2010

Miracle Drug

It's 10:20AM on Friday, the last day of our cruise, which is bittersweet because I hate for the trip to end yet I really want to go home.

I am in the Explorer's Lounge with Lou, who is listening to a lecture about navigation at sea. We are in the front row. I have my laptop in my lap, my feet elevated on the couch, and I am clearly not paying attention to the speaker. I hope that is not too rude! There are a lot of people here, mostly men, and they seem to be hanging on every word and every slide.

The paperwork for the clinical trial drug listed a lot of possible side effects. One possible side effect is a decrease in appetite. I'm definitely experiencing this side effect.

It is pretty weird, not being hungry. I've spent my whole life being hungry and interested in my next meal ;^) so in a way this makes the clinical trial drug even more of a miracle drug.

But now I am just not hungry. Early this morning, I ran down to the coffee bar to get lattes and pastries. But when I got there, I realized that I was not at all interested, so I got a latte and a chocolate croissant for Lou and nothing for me. In what universe does that happen?!

What is really funny is that the paperwork for the clinical trial drug indicated that there is not a resulting decrease in weight -- I guess because it is pretty easy to eat even when you are not hungry.

Perhaps this is just the universe trying to make up for the fact that the steroids I had during chemo INCREASED my appetite so that I gained weight during chemo, which seems so wrong.

Thursday, January 7, 2010

One Week Till Scan

One week from today, I go for my first CT Scan after starting the clinical trial. It will be two and a half months since chemo ended, and two months since the clinical trial started.

I am sitting here trying to determine how I feel. I don't feel nervous (which surprises me). I just feel really interested to see what the results are. Of course I am hoping that the results are good: no new tumors; no growth of existing tumors. But I am not anxious. Maybe it's impossible to feel anxious about anything after 12 days of wonderful vacation fun.

Lou and I just walked a mile on the Promenade Deck. We got lapped by some rickety old folk, but that is okay.

We are headed up to Skywalkers Lounge to sit in comfy chairs and read and rest. This afternoon, we have an amazing 3 hour "Ultimate Ship Tour." We're finally going to see the bridge! Plus a whole lot of behind the scenes, crew only areas that are normally completely off limits to passengers.

We saw this tour on a flyer on the first day. It costs big bucks, and you had to put your name on a list and just HOPE that you got picked. (Lou thinks that they did a background check.)

We got picked!

This will be something to remember for sure.

Wednesday, January 6, 2010

Sir! This is the ladies locker room!

This has been a great day. We are in Aruba but we chose to stay on board today to relax by the pool. Then I had a massage, and soon I will run off for a facial. Such luxury and pampering!

Somthing funny happened in the ladies locker room after my massage.

I was at a locker, swathed in a huge terry cloth robe, no hat on, fiddling with the key trying to open the locker. A woman at the door called to me, "Sir, this is the ladies locker room!"

So I said, "That's okay, I'm a lady."

The poor woman apologized and said she was embarassed. I told her not to worry about it because it's an easy mistake to make. This is not the first time it happened. I guess with just a glance, the lack of hair leads you to think I'm a guy. I must need bigger earrings and maybe a touch of lipstick!

Anyway, the peach fuzz has pretty much filled in everywhere on my scalp, and I no longer have any shiny bald patches. But it is very short and a mix of black and white, so it is very hard to see (especially the white). It is sort of fun to pet though ;^)

I have been getting pretty comfortable walking around the pool without a hat.

I promised myself that I would not have to wear the wig to work anymore once my vacation was over. I am not sure how I will feel on Jan 11 when I go back to work -- I can't say yet whether I'll be a redhead or a salt-and-pepper head.

Tuesday, January 5, 2010

Ultimate Fashion Faux Pas

Today I am wearing a pink polo shirt, pink Boston Red Sox cap, white Bermuda shorts, white sneakers, and flesh-colored compression stockings. Yes, compression stockings with shorts, this is what I have chosen to wear today.

It looks awful.

But I have to wear the stockings, and it is going to be pretty darned hot today, so I have to wear the shorts.

Maybe people will be so busy looking at my obvious semi-baldness that they won't notice the stockings ;^)

These stockings are flesh colored, but they have a band of white silicon dots along the top which looks terrible but miraculously keeps the stockings in place. (There is something super awful about compression stockings that fall down and have to be constantly pulled back up.)

Anyway, I plan to enjoy the sunshine and sights on Bonaire.

Monday, January 4, 2010

Two Year Old Neighbor

We have a two year old in the next cabin who is crying his heart out. He's on the balcony, poor little guy. (I am not saying that Mom and Dad have locked him out there alone! I am sure someone is out there with him.)

Lou is on our balcony listening to a book on his MP3 player, smoking a cigar, and drinking a margarita. I cannot tell if he can hear the sobbing. I can hear it, and I am inside the cabin with the sliding glass doors closed. Uh oh, now I hear the stamping of little feet! Maybe someone needs a nap.

I have always wondered about kids who go on cruises. When they grow up, do they rebel against luxury and go camping instead?

I was trying to take a nap but couldn't. I guess the latte I had after lunch kicked in finally.

Tonight there is a White Hot Party on deck starting at 10:15PM. You're supposed to wear white. I have plenty of white; so does Lou. So we plan to go dance the night away on deck. (which is why I was trying to take a nap, so I could stay up late.)

My cough has come back, so I am using my inhaler again which helps. My ankles are still swollen; right now I have my feet elevated while I type with my laptop in my lap. (I love this laptop.) I think that I might even resort to wearing my compression stockings with shorts [gasp] which looks terrible but would help a lot to control the swelling. Today I just couldn't do it, so I wore a skirt instead to try to camoflage the compression stockings.

Today is the day that most of my coworkers went back to work. I thought about work for awhile today. There's a lot for me to do when I get back, but I do not feel as panicked about work as I did before this vacation. I think that the break has done me good.

Friday, January 1, 2010

Balloon Drop

There is no sushi restaurant on the Ruby Princess. Instead, there is a wine bar called Vines where you choose a glass of wine, and the staff give you either a bit of cheese or a bit of sushi to enhance your wine-drinking experience. I am not a wine drinker; therefore no sushi for me.

But I am having such a great time, I do not even care.

New Year's Eve in particular was just perfect. Lou and I got all dressed up, went out to the Crown Grill for a special dinner to celebrate Lou's birthday, and then saw a wacky comedy show with Adam Ace. By then it was 11:15PM and time to go to one of the three parties on board. We chose the party in The Piazza (which is a beautiful three story atrium mid ship) because there would be a balloon drop, and I had never been in a balloon drop before.

When we got to The Piazza, the place was very crowded. There is a small dance floor, and I started to walk away to find a good spot along the railing from which we would have a good view of the action. But then I was overwhelmed with the certainty that I did not want to watch the action -- I wanted to be in the middle of the action. Plus, the balloons were suspended over the dance floor. With everything that has happened this year, I want to enjoy myself as much as possible today because there are no guarantees for tomorrow. I just couldn't stand the idea of my shyness keeping me from having fun.

So, I grabbed Lou's hand and we slipped into the slow-moving stream of people making their way onto the dance floor. Luckily, Lou is The Best Husband in the World and always game for whatever happens. Boy it was crowded. Then I saw a big open space, right in front of the band. We squeezed our way over there and started dancing.

The music was great, and everyone was having fun. I was laughing and dancing and bumping into people and having them bump into me. Then the band started playing "I Will Survive" and I got completely and unexpectedly choked up. Lou knew and hugged me tight.

As midnight approached, I looked up at three floors of people all crowded against the railings looking down at the band and dance floor, and I was filled with joy that I was dancing and not watching. Not that we were really dancing! There wasn't enough room to do more than wiggle or bounce in place.

Suddenly everyone was counting down to midnight, and then Lou grabbed me for a big romantic kiss and the balloons floated down on top of us. It was magical. We batted the balloons back into the air, and we stomped on some of them. I grabbed a perfect pale pink balloon and held on to it for a long time, planning to bring it back to the cabin and have Lou take a picture of me with it and post it to this blog so you could see my sparkly black gown, but a tiny little girl on the end of the dance floor stared so hungrily at my balloon that I had to give it to her. It was my first good deed for 2010.

Happy New Year!