Breakfast Fun

Lou, Omer, Patsy, and I sat out on the deck drinking coffee (and tea) and listening to birds and watching golf course maintenance men at work for awhile this morning.

Then it was time for breakfast.  Karen made Lou's breakfast, Patsy made Karen's breakfast, Patsy made Patsy's breakfast, and Omer made Omer's breakfast. That's a lot of cooks in the kitchen at one time, but it was fun.

Omer accidentally spilled the beans about real mayonaise being in the house, and Lou scoffed that he already knew about it. There is no hiding anything from that guy, even if you tuck the jar behind the pickles.

Lou and I are headed to work, and Patsy and Omer will entertain themselves today.

Last night, we went to Tripps for dinner. As we pulled into a parking spot, I noticed our closest neighbor, Pat, standing outside the restaurant.  Turns out she was waiting for John, so we all had dinner together. It was great fun. We talked a lot about our recent trip.

100 Miles West of Asheville

My parents are coming!

Lou suggested that it might be a good idea to ask them to come here for the first round of Doxorubicin chemo, which starts next Wednesday. I had to think about it for awhile. Do I want to barf on my parents?  But they loved the idea and offered to drive here lickety split. After thinking about it, I realized that having them here will make everything so much easier -- and if ya can't barf on your parents, then who can ya barf on?

(Subsequent research has indicated that there might not be any barfing at all.)

Patsy and Omer left the Phoenix Arizona area on Monday morning and have driven like maniacs to get here.  We didn't expect them till Saturday, but it looks as though they will arrive this evening, or sooner.  We thought that they would take their time, visit some landmarks, sleep late in some motels... but no.

This morning, they said they were 100 miles west of Asheville.

Just a minute ago, Patsy called to update their status: they are now in the same time zone as I am.

• On Monday night, they slept in Santa Rosa, New Mexico.

• On Tuesday night, they slept in Van Buren, Arkansas.

• One Wednesday night, they slept in Harriman, Tennessee.

• Tonight, they will sleep in Raleigh, North Carolina!

The only sad news is that the ironing board had a bad hinge, and so they are not bringing it to me.  This morning I ironed a little and reassured my current ironing board that she would not be supplanted by some newcomer.

Carb Loading

During a staff meeting yesterday, I was overwhelmed with sleepiness and actually briefly put my head down on the table. The more serious discussion had ended, and we were sort of just chatting about current events and general complaints. That part of the meeting is often the most interesting, so it was strange that I could not focus. I assumed that it was jetlag and that I desperately needed some caffeine.

When the meeting ended, I grabbed some lunch and went back to my office. I checked my blood sugar before lunch (because I had decided to check it often for a couple of days, to gather enough data with which to request going off the Glyburide). It was 63.  No wonder I was sleepy!

I immediately drank some orange juice and then re-checked my blood sugar in 15 minutes. It was 69.  I ate lunch and kept an eye on it for the rest of the day. It stayed low, never higher than 112 even after spagetti.

I guess I have all the data I need to stop taking the Glyburide. So this morning, no 1/2 green tablet for me.

Woo Hoo!  How many people become non-diabetic?!  I feel very lucky.

Questions Need to be Asked

In one week, the new chemo starts. I think that I need to call Dr R and ask some questions. But the questions are only half formed and swirling in my head. I need to make a list and then call.

Mostly, I am interested to hear what we are going to do to keep the nausea and barfing from occurring.  Nurse Carolyn said, "There will be nausea and vomiting," but so many people I have talked to have told me otherwise.

I was also going to ask about Doxil (which someone mentioned in a comment) instead of Doxorubicin, but after I surfed the web a little I am not going to ask. There is an increase in  some terrible hand and foot side effect, and I already have a lot of foot trouble...

But most importantly, I have to pick up some Sudafed for Lou before I go to work this morning.  He is miserable.

Oh, and here's a big THANK YOU to Nancy for the amazing cookies from Kona.  They arrived last night when all our accumulated mail was delivered, and I must admit that the box is somewhat depleted. They are awesome. It has made the transition from the cruise to real life a little easier to take. There are a lot of cookies on board a cruise ship, let me tell you.

Flight Cancelled

Travel days are a drag. We got up at 4:45AM to get off the ship at 6:00AM for our bus to the airport. I continued reading Laura Bush's memoirs but had to stop when I realized we were at 9/11 and I could not handle reading about that on a travel day.

When we got to the airport, we were told that our flight to JFK was cancelled! Mechanical problems, they said. We formed a massive line in front of the Delta ticket desk and waited and waited... no one looked happy as they walked away after being waited on. A lady next to us checked the internet and found that she had already been re-booked onto a flight tomorrow. We thought for sure that is what would happen to us, and we shrugged and resolved to suffer one more evening of fun in Rome if that is what the universe wanted to do to us ;^) 

But when we got to the desk, we were placed in a US Air flight to Charlotte leaving just 30 minutes later than our original flight!  Awesome.  I did the happy dance, told some people in line what we got, and then split for security.

It was a strange experience in the airport.  We stood in line for an initial security screening, stood in line for checking bags, stood in line for another security screening, jumped on a bus to get to our gate, hung around for awhile, presented our tickets to board the plane, went down a million steps, and then gopt on another BUS for the ride out to the huge jet on the tarmac!  There were two stairways leading to the jet. There were nine seats in our row (2 5 2). 

Anyway, the part I skipped is that we used up the rest of our Euros in the airport for coffee and croissants at Food Land (super yum) and then bought water to carry on to the plane. Luckily we also ran into Lela and Robert, whom we had met on the ship but never exchanged email addresses with.

Oh, and I got a migraine between the coffee and running into Lela! Luckily I had Immitrex right there in my carry on.  I had a long period of sparkly lights and moderate pain. I was worried that I would mis-read something and make us miss our flight, but it worked out fine. Once we got on the plan, I slept for quite awhile and then woke up feeling much better and even able to read.  (This morning, when I cough or sneeze, I have residual sharp headache pain, but that is normal for me after a migraine.)

I like US Air.  The flight attendants were awesome. I watched The Blind Side, finally, and cried.

It is so good to be home. I am leaving soon for work, and Lou is out walking Miss Samantha right now.

What a fabulous trip!

Blogifying

Almost every afternoon, Lou and I go the Cafe al Bacio on Deck 5. Lou gets espresso, and I get a pot of tea. I usually bring my laptop and take the opportunity to type up a description of what happened so far that day. Keeping a log of the trip is the only way we remember everything that happened. It comes in handy when we post pictures to www.rossranch.com too.

So here I am, blogifying in the coffee shop. Too bad I am not smiling.

I am having an excellent trip!

I have been trying not to think too much about chemo starting on June 2.  I was greatly relieved at all the information I got from various people. So then I put it out of my mind for now.

Today I looked at scarves for my head but did not find anything to buy. There were many lovely options, but nothing appealed to me as something I could wear to work wrapped around my head. I am not looking forward to wearing a wig again. I heard that I'll probably lose my hair 15 days after I start the Doxorubicin. That's June 17.

Plush Plum

I am wearing Olay plush plum lipstick in the hopes that no one will call me "Sir" today.

This morning our tour does not leave till 10:15AM, so Lou and I have been enjoying a liesurely morning. First, we slept late, and then I ran down to the coffee shop to take out frothy caffeinated beverages. We sat on the balcony watching the island of Rhodes as we approached. Then the butler (!!!) delivered breakfast, arranging a white tablecloth and fancy place settings for us on the table on the balcony. (I am in heaven.)

We docked smoothly at the port and luckily we have a fabulous view of the Old Town (the part of the town inside the ancient walls).

We have been sitting around, drinking coffee and tea and freshly squeezed orange juice, and watching the taxi drivers clean their windshields, laugh, talk, and wrestle as they wait for victims, er, tourists, to disembark.

Our tour today is a walking tour through the Old Town.

I am feeling great. My back was bothering me yesterday. Every time I got up, I had to make an effort to stand up straight. But some Advil and a good night's sleep solved that problem.

We have met a lot of people, and I have not mentioned that I am about to jump back into chemo. Let them think I just have an unfortunate hairstyle.

A Little Light Reading

I realized today that I have not been itchy for days. It is funny, but true, that it is difficult to notice the absence of something. I am not even sure when the itchiness subsided.

I am feeling good. I have been sleeping really well; there is nothing like being rocked to sleep on a ship. We have been waking up early and running around all day like maniacs, and then I am ready for bed around 9:00pm.

I totally fell asleep on the bus today. Almost everyone fell asleep.

I am reading Laura Bush's memoir, Spoken From the Heart, and I am really enjoying it. I am not that far into it. The first President Bush has just been elected, and Laura and George have just moved to Washington. The memoir is full of unexpected, touching stories. I keep getting really choked up and having to stop reading. And I keep reading short passages aloud to Lou because I want to share them.

There was one passage that really got me. I'm going to quote it here for you because, well, you'll see why:

"Life's largest truth may be that everyone faces tragedy. Learning to accept those tragedies, learning to accept that life is riddled with events large and small, events that you may cause or that may happen to you, events that you can never control, is perhaps the hardest lesson of all. In that wrenching fact, I have faith that no one is ever alone."

Taormina, Sicily

I am the yellow hat in the lower left corner of this photo. This is the Piazza del Duomo in Taormina, Sicily, where we were supposed to meet up before returning to our bus for the ride back to the ship.

We spent a wonderful 2+ hours wandering around Taormina.

Thumpa Thumpa Thumpa

The heart stress was not at all what I expected. I thought that I would be on a treadmill huffing and puffing with electrodes and beeping, like Tim Allen in The Santa Clause. 

Instead, I had to undress and put on a couple of hospital gowns and endure a couple of injections. The first injection was a substance that the nurse said was like liquid tin that would prepare my red blood cells for the second injection. Thirty minutes later, I got the second injection, which was a radioactive substance that stuck to my red blood cells. Then the nurse quickly popped me under some kind of xray camera thingie and took pictures for about 20 minutes. Afterward, I got to watch a black and white movie of my heart pumping away in my chest.

Neato.

My heart is strong, and I ought to be able to have the Doxorubicin.  Of course, I have to wait for official word from the doctor.

Duke Blue Devils Serve Up "The Red Devil"

On Sunday, Lou and I dropped by our neighbor's house to talk about how they will entertain Miss Samantha while we are on vacation. They'll walk her and then hang out and keep her company.

I took the opportunity to ask Pat if she knew anything about Doxorubicin (brand name Adriamycin). I thought that maybe she had heard something, but it turns out that she has actually had it!

Pat told me that people call it The Red Devil.  (It is red, and it turns your pee and tears red for a couple of days.)  The wonderful news is that Pat told me that she did not have nausea and vomiting while taking it.  She took Compazine prophylactically (as a preventive measure). That is, she took it on a schedule to keep nausea from starting, instead of waiting till she was nauseated.

I plan to do the same.

You know, I was mystified why Nurse Carolyn would say, "there WILL be nausea and vomiting," when we were talking about this chemo.  There are so many anti-nausea drugs, why would there be nausea and vomiting?

Knowledge is power, and I feel a lot better about the coming treatment. Of course, my thrilling vacation is helping cheer me up too.  I just asked Lou if he was busy on Thursday, if maybe he'd like to go do something fun that day.  Maybe fly to Rome.

Medicine Mix-Up

Yesterday I had all my vitamins, supplements, and prescriptions out on the table, and I was filling up my pill containers for the trip. I had just picked up a bunch of refills from the pharmacy that afternoon, too. I am bringing 14 days of drugs, althought the trip is actually 12 days, just in case we get stuck somewhere.

For each vitamin or medicine, after I finished filling the pill container, I set that bottle aside so I could see how many bottles were left to deal with.  When there was just one bottle left, I was sort of mystified because according to my expectations, the pill containers were full and complete.

I looked at the remaining bottle. It was a prescription made out to me by Dr Reidel. The name was prochlorperazine, generic of prochlorperazine maleate. I had no clue what this drug was and why they had filled it for me. So I googled prochlerperazine maleate and flipped out. It is an anti-psychotic drug for schizophrenics who have severe symptoms!  Yikes!  How could this happen, that the pharmacy gave me someone else's drug?! I worried about some poor schizoprenic out there being told that there was no prescription waiting for her. What would the voices in her head say about that?!

I called the pharmacy, but they had closed already. I told the clerk that the pharmacy had made a huge mistake, and he said I needed to talk to the pharmacy manager in the morning.

Lou talked me out of fishing through the trash can in the garage looking for the pharmacy insert that must have come with the mystery bottle. I couldn't learn anything from the insert that I would not learn in the morning when I called the pharmacy. He was right.

I glanced at another web site that google found for me, and then the word compazine jumed out at me. Compazine is one of the anti-nausea drugs I used to have for chemo and which I will be using again for the new round of chemo.

Had Dr Reidel called in a new prescription for me without telling me? He had asked me to bring my old bottle of pills with me on June 2 so he could make sure that the old ones were not expired and so he could call in a new prescription.. I looked again at the mystery bottle, at the fill date.  6-28-2009.  Oh God, I had not even noticed the date. 2009 is last year. This was my old bottle of compazine, which I had taken out of the drawer to that I would not remember to bring it to my appointment. I always kept an elastic band around it, so it would stand out from the other bottles and be easy to find if I ever felt nauseated. But I had thrown away the grungy elastic band and put the bottle on the kitchen table, where it had gotten mixed in with all my other bottles by accident.

The first thing I thought of was, Thank God the pharmacist had not been in. I would have felt like such a dope to be telling him he made a huge mistake -- only to have him tell me I was the one making the mistake. That fill date just did not register at all.

So I put the compazine away, with a new elastic band around it. I need a vacation.

How Much Pressure Can I Take?

Yesterday, I picked up two pairs of new compression stockings from the Ashworth drug store in Cary. My varicose vein socks just did not exert enough pressure to keep my feet and ankles from swelling.

This morning, first thing I did was take a shower and then jump back into bed and elevate my feet so that my ankles did not start swelling. Then I pulled on the new socks. That was not as hard as I had expected, probably for two reasons: I read the manual last night so I knew the recommended strategy, amd my ankles were a lot smaller than when the lady measured me.

So far, so good. I am dressed and ready to leave the house. Lou and I are headed out for breakfast, and then we will run a million errands to get ready for the trip. Tomorrow, I do laundry and we pack.

The only other ankle news is that my fabulous primary care physician suggested that I bring extra diuretic and potassium with me on the trip, so if I super swell in the heat, I have a medical solution. 

Am I Still Diabetic?

There is a chance that the diabetes will go away now that I am off the clinical trial drug, presuming of course that (A) I was ever on the real clinical trial drug and that (B) the diabetes was actually caused by the clinical trial drug (and not by my love of pasta).

So I am checking my blood sugar faithfully, like 5 times per day. That's first thing in the morning, and then both before and after both lunch and dinner.

On Wednesday and Thursday afternoons, I dropped to 98 (which is about 50 points lower that the previous week).  In general, the last couple of days, my numbers have been much improved, but they are still not within the normal range.

I saw my fabulous primary care physician yesterday and he suggested that I monitor my blood sugar closely. If the numbers are all in the double digits then I should switch to one half pill per day. Then if the numbers remain in the double digits, I can go off the pill entirely and see what happens. I was looking for this strategy because I didn't want to be wondering what to do while I am on the cruise, with no access to my doctor. (Although there is always a medical center on board.)

It's funny but a lot of times things hit the fan on vacation.  Sometimes those things are difficult, like the ridiculous swelling of my ankles in January in the Florida heat. Sometimes those things are good, like when we finally got an offer on our house while we were anchored off the coast of Spain, and we had to fax a 50 page signed offer back to our agent using the on-board satellite fax...

It would be wonderful to have the diabetes go away.  (But it would be okay if it does not go away, because it certainly helps one stick to a reasonable food plan.)

Vacation Plans

Wow, this morning I read all your comments and felt buoyed up. Thanks everyone for cheering me on!  Your comments have always been helpful, but this week they helped more than ever. I was really bummed on Monday. Now I am reminding myself to focus on the positive and keep fighting as hard as I can.

_______________________________________

Starting on Monday night, Lou and I cancelled all my travel plans for the year, which included trips to Tallahassee FL, San Antonio TX, Sun City West AZ, and a cruise to Greece. They were all hard to cancel, especially the trip to my parents' house and the trip with my old friend Kathy from Seattle.

But Lou is always thinking a few steps ahead, like life is a chess game, and he suggested that we try to do something BEFORE the chemo starts on June 2. We have just under a month, and I will be feeling wonderful. We could go anywhere, do anything... as long as my boss agreed to let me go (which she did).

There is no denying that we love a cruise more than anything. It's so easy to unpack once in what is essentially a luxury hotel, and then wake up every morning in a fabulous new place because the hotel floated there overnight. Plus, there is a chocolate on your pillow every night, and now that I am not longer taking the clinical trial drug, I can have that chocolate!

We looked at Northern Europe and Greece, and Greece won. (I have been trying to go on a Greek Isles cruise for years, but something always seems to get in the way. I started thinking that the universe does not want me to go to Greece, but this cruise fell into place so beautifully that the universe must want me there.)

We leave next Thursda!! We fly to Rome, hop on a bus, and board the Celebrity Cruises new ship, Celebrity Equinox.  It's a 10 Night Eastern Mediterranean Cruise, and here is the itinerary:

Rome (Civitavecchia), Italy
Sicily (Messina), Italy
Athens (Piraeus), Greece
Mykonos, Greece
Ephesus (Kusadasi), Turkey
Rhodes, Greece
Santorini, Greece
Naples/Capri, Italy,
Rome (Civitavecchia), Italy

Last night, we chose shore excursions. Oooh, we are going to have fun. The fact that this cruise stopped in Naples was a big deciding factor because, ever since we saw Pompeii, we have wanted to go back to see Herculaneum. (Pompeii was a commercial town, and Herculaneum was a resort town. Plus Herculaneum is supposed to be much better preserved.)
 
Anyway, the plan is to go and have loads of fun before the chemo starts.

And here is a diagram of our cabin:

Kicked Off the Clinical Trial

Today was Scan Day, and the news was not good.

I knew something was not right when Dr Reidel talked about this and that for a few minutes without once mentioning my scan results. And the clinical trial nurse was in the room, too, which is unusual. Maybe she was there to hug me. She did end up cracking some pretty funny jokes later on.

The news: Two tumors in my lungs doubled in size, but they were very tiny to start with! One went from 9mm to 18mm, and the other went from 2mm to 4mm. Plus, the mass in my pancreas also grew by some unspecified but small amount. (The tumor in my psoas muscle stayed the same; that is the one that is a charcoal nugget still smoking from the radiation and chemo it has been bombarded with.)

It did not matter how small the growth was, however. Any growth at all meant that the clinical trial drug is no longer working, and so I got booted out of the study.

My eyes immediately filled with tears, and those tears started rolling down my cheeks silently. I just ignored the waterworks as I asked questions and listened to the news.  Dr Reidel handed me a very small box of tissues, and I wiped out almost the entire box.

I am getting four weeks to bounce back from the clinical trial drug and get ready for more chemo.

The chemo will be Doxorubicin (brand name Adriamycin). There will be nausea and vomiting. The chemo is red, so I will have freaky red tears and red pee for a couple of days afterward.

Here are the good things that I am supposed to keep in mind:

• I don't have to deal with the clinical trial pills anymore. No more keeping them in the fridge, no more making sure I consumed only water for two hours before and after I took the pills.
• The tumors grew only a little bit.
• I do not have all that much cancer (there are nine tumors but they are very small).
• Doxorubicin works from about 60% of people.
• Doxorubicin is injected pretty quickly -- I won't have to sit around for 3+ hours getting this chemo.

 Chemo starts on June 2.

 I will probably feel wonderful for the next four weeks as the clinical trial drug gets out of my system. I'm going to enjoy feeling wonderful.