Saturday, June 30, 2012

Healthcare law upheld - a discussion

In case you're interested in what breast cancer patients think about the Health Care Act, here is a very good discussion.  Within it, you will find external links to summary information and some timeline information - when certain provisions will take effect.  It's worthy of your time to check this out.

For those of you who feel this should be a states rights issue, there is a provision where a state can set up its own plan that provides the same level of care.  The state can go to the Heath and Human Services department and gain approval of their plan, assuming it meets the criteria.

And Congress and Congressional staff will now be offered the same insurance offered to those in the insurance exchanges.  No more "special" plans for them - they will have to live within the system like the rest of us.

Whether you agree with a national healthcare plan or not, there are many provisions that MOST of us agree are good. 

Read and learn.

Thursday, June 28, 2012

First Xeloda cycle is done...

and so far, so good.  I had labwork yesterday and my CBC looks really good.  I am having a little acid reflux and spicy foods hurt my esophagus.  So, I'm taking Prilosec for the acid problem and I'll just avoid spicy foods.  Not a big deal, really. 

My next oncology checkup is July 11th.  But I do have an eye doctor appointment on July3rd.  I saw the same optometrist for ten years, so I hated having to make that change.  But I guess it's not practical to fly to Kansas City for an eye doctor appointment!!!  And if I want new 30-day contacts, I've got to bite the bullet.  Small price to pay for being back here in New Hampshire, close to my family.

Wednesday, June 20, 2012

First weekly Xeloda checkup...

and all is well.  My labwork all came back almost identical to my April results, so that's good news.  So far I've not experienced any side effects at all.  Apparently there is a very specific enzyme that is required to process this drug and if you don't have it, you have major-league nasty side effects.  And like most chemotherapy, side effects are cumulative and tend to occur after you've been on treatment for some time.   I've got a ways to go before I'll know if this is going to be a gentle drug.  And even more important, it will be a couple months before I know if it's working for me. 

Keep your fingers crossed!

Tuesday, June 19, 2012

A medical update

Now that our Paris trip (a definite no-cancer zone) is a fond memory, it's time to come back to the reality of dealing with metastatic breast cancer (MBC). 

Pills, pills and more pills.  So now I have two "chronic" illnesses - Type 2 Diabetes and MBC.  Taking medication is nothing new to me - I've been diabetic for 11 years and I'm used to swallowing medications.  And during chemo last summer, I felt like a chemical waste dump as I took so many meds to counteract the side effects of the strong chemo that was supposed to tame this beast.  The meds made chemo tolerable for me, and I managed to get off all of them, other than the diabetic meds, for about six months.  And then came the blood test that foretold the likelihood of more cancer taking up residence somewhere in my body.  And the PET/CT scan that confirmed our worst fears. 

Last Tuesday my Xeloda arrived from the specialty pharmacy associated with Express Scripts.  Surprisingly, this $2600 a cycle medication has a co-pay of just $25.  That's a relief, I was a bit worried that we'd be on the hook for several hundred dollars a pop.  I took my first dose last Tuesday evening, 1500 mg (that's 3 of the brownish-looking pills) thirty minutes after eating.  It's not a med you want to take on an empty stomach, as it can cause nausea.  So morning and evening, after dinner, I have X for dessert.  I've now completed a full week of the two week cycle, after which I'll have one week off before "rinse and repeat." 

Xeloda is the brand name for capecitabine used extensively in the treatment of both colon cancer and metastatic breast cancer.  My Dana Farber oncologist in Boston told me that the side effects were mild, maybe a little peeling of the hands or feet.  But it's another one of those situations when you read the prescribing information and all the possible, or likely, side effects, it's not as benign as she made it sound.  But then, reading the prescribing information for aspirin can scare you, too. 

The good news for me is that, so far, there is no news.  I've not experienced any side effects.  I seem to have avoided the more immediate possibilities like nausea or severe gastrointestinal distress (my nice way of saying explosive diarrhea).  The "peeling" is actually hand/foot syndrome and it can arrive, on average, 11 to 79 days after treatment begins.  So I haven't been on X long enough to experience that particular problem.  There is the possibility of other side effects that could crop up - problems with my bilirubin counts, the usual low white and red blood counts, and a few other unpleasantries that you can read about if you're very curious:

I will have bloodwork weekly for a while to be sure that none of these nasty things are unknowingly occurring.  Dosage can be adjusted or a treatment cycle skipped if severe side effects do occur. 

How will we know if X is doing its job?  I'll have PET/CT scans again mid-August.  Dr Walsh, my local Dana Farber oncologist, warned me that these first scans might not show if X is effective, because there was a month from the time my MBC was found until I started taking X.  But it sure would be nice to see some regression, or as my MBC sisters call it "Reggie-Boy shows up."  The long-term goal, of course, is to have a scan that shows no evidence of disease.  That would mean a nice long dance with NED.  NED and Reggie are my friends.  The "stable" boys are OK, too. 

One more thing...on Wednesday after we returned from Paris, a biopsy was performed on one of the nodes that lit up the PET scan.  The point was to reconfirm the hormone status (ER, PR, and Her2/neu).  The results came back ER negative, PR 3% (essentially negative) and Her2/neu negative.  In discussing the Her2/neu results, we know that my pathology from last year's surgery showed that I was Her2/neu +.  One + is considered negative.  Some people are ++++.  They get a targeted therapy called Herceptin.  There are some clinical trials underway to determine if administering Herceptin to those of us with just one + is an effective treatment.  So because the latest biopsy came back as negative without explanation, my doctor has ordered a FISH test to ascertain my Her2/neu status.

If the test should come back with one +, I may qualify for one of the clinical trials and would receive Herceptin or maybe even that new "smart bomb" that some of you heard about.  I need all the help I can get, and I'll gladly participate in any trial that shows promise in controlling MBC.

For those of you who might want to learn more about MBC, there is an excellent website:

One more site where you can join in discussion with others who are supporting family and friends with breast cancer:

There are close to 115,000 people who have registered on - it's a wonderful site and has been an incredible source of support and information to me and all the others who are fighting this beast, and there's a place for family and friends to support one another, vent, and learn.

Monday, June 18, 2012

And now, for the rest of the story...

Anyone remember Paul Harvey?  He was such a great story teller and always had a big pause before telling "the rest of the story."  I used to enjoy listening to him when I would leave work to go buy lunch - he was always on during the mid-day news programs.  I feel a little like I've imitated him, it's been a while since I've written about our trip to Paris but it's time to finish the story.

On Friday morning we were up bright and early, enjoyed our usual quiche, coffee and pastry breakfast, then headed downstairs to meet the pre-arranged taxi that would take us to Versailles.  It's a bit outside of the city and the ride was about 30 minutes.  We were happy to be leaving the city, the incoming traffic jam rivaled anything you see in LA or NYC. 

Our  driver got us as close as he could, Christine went ahead to scout out the handicap entrance, and before long we were in, bypassing the insane crowds that were already lined up.

I am thinking that the French school year is similar to ours in America - we ran into large groups of students at every attraction.  Lines were long every day, in every way. 

We were immediately struck by the grandeur of the complex, the sheer size is overwhelming, and there is gold everywhere!

"The Château de Versailles, which has been on UNESCO’s World Heritage List for 30 years, is one of the most beautiful achievements of 18th-century French art. The site began as Louis XIII’s hunting lodge before his son Louis XIV transformed and expanded it, moving the court and government of France to Versailles in 1682. Each of the three French kings who lived there until the French Revolution added improvements to make it more beautiful. "

It's just hard to fathom that the chateau started as a mere hunting lodge.  We here in the US have some very different ideas about hunting lodges - mostly pretty simple, rustic structures that can be thought of as a "cabin in the woods."  These Louis kings certainly had other ideas!

Every time I tour a European castle, I am completely astounded by the complexity of the architecture and the beauty of the ceilings.  If all you ever did was go in and look up, you would be filled with amazement and wonder.  How on earth did they manage to create these beautiful ceilings?  The idea conjures up sites of scaffolding with more than one artist at work for decades on just one room.  And yet they are all elaborately decorated, painted, gilded.  It's just beyond comprehension, really.

And the marble, what tools did they use to chisel it into such grandness?

A little wallpaper!

Hard to believe that people would deface some of the mirrors

The Queen's Bed

After finishing what we thought was the basic tour, we found a cafe in the Chateau and grabbed some lunch.  We split some nice sandwiches on baguettes that were definitely big enough to share, and of course, some fabulous desserts.  Never passed up desserts!  A lemon tart and an eclair, both were delicious! 

After lunch, we headed out to explore the fabulous gardens.  Enormous gardens, with grand stairways leading down to more fabulous gardens.  There was just one thing to do - rent a golf cart.  Yes, an anachronism, for sure, but the only way to get Allison and me around the enormous and beautiful landscape.

"Situated to the west of the palace, the gardens cover some 800 hectares of land, much of which is landscaped in the classic French Garden style perfected here by Linnea. Beyond the surrounding belt of woodland, the gardens are bordered by the urban areas of Versailles to the east and Le Chesnay to the north-east, by the National Arboretum de Chèvreloup to the north, the Versailles plain (a protected wildlife preserve) to the west, and by the Satory Forest to the south."

What's a hectare, you ask?  Well, it's 2.47 acres, so you can get an idea of the massive size of these gardens.  Entry to the gardens is free during the week, there is a fee on weekend.  The reason - they don't operate the magnificent fountains during the week, a huge disappointment for us as we were there on a Friday and all the fountains were still.

You may notice the symmetry in the gardens.  Apparently the Kings were fond of symmetry, you see it both inside and outside the Chateau.  Even when gazing through the windows, it appears that the gardens were designed to offer up a jaw-dropping view.

The greenery was lush and beautifully manicured, but I am fond of flowers.  So I was delighted when we came upon the home of Marie Antoinette and I found a lovely rose garden.

And Hydrangeas

After our golf cart tour, we made our way out of the Chateau, following the crowd in hopes that it would lead us to a taxi stand.  And we did find one, but there was no taxi.  We hung around for a bit but we were coming up empty, so we proceeded to a Tourist Information Center and the kind folks made a phone call and we climbed in about 15 minutes later, relieved, because for just a few minutes we were worried about how we were going to get back to Paris!

We got back to our apartment and decided that it was time for dinner and a little more exploring our immediate area.  That morning Rick had noticed tents lining the streets - a flea market or some sort of neighborhood sale.  He wanted to look and we wanted to find dinner.  So we were off again, poking around the sale items and finding interesting "stuff" like lots of kitchen and silverware, old Russian and French war headgear, glasswear and old jewelry.  What we didn't find was what I was looking for - handcrafted items for sale.  I wanted a coffee mug made by a French potter.  I decided last year that coffee mugs would be my new "collectible" as they would be useful, unique and remind me of the places where I acquired them.  And my existing mugs were 15 years old, the pattern faded and I was ready for a change. 

After exploring, it was time for dinner.  We stumbled upon a little bar/cafe that we weren't too sure about, but decided that we were hungry and it would do.  Well, it turned out to be a great find.   The bartender/maitre d'/waiter/everything but chef who didn't speak much English.  But he was able to provide a menu that had a bit of English so we could figure out what to order.

Gotta love the fancy table "cloth" -- pretty much like a giant unfolded paper towel!
And yet, it looks downright charming!
Steak with Potatoes Dauphone
The best veal dish
Apple tarte tartin - I am in love with this version of apple pie

Crepe with bananas and chocolate

Honestly, this was some of the best food we had, and we were so pleasantly surprised.  And the prices were so reasonable! 

Our day ended on such a fabulous note!

Saturday came, the girls' last day in Paris, and there was just one thing on the agenda - SHOPPING.

We took a taxi to Bon Marche, thinking it would be a good place to start.  Well, Bon Marche is a good place to look but not so much to buy.  High end designer "shops" translated to American "departments" and this was not exactly what we had in mind.  We did spend some time in La Grande Epiciere, a fantastic high end grocery store attached to Bon Marche and ooh'd and ah'd over the beautiful displays and fabulous products.  I took a few pictures until a store employee told me photography was not allowed.

In Bon Marche, I was pleased to see the design on my purse come pretty close
to the design on this Louis Vuitton top.  I'm so stylin!!!

LOL at the American Products on display
Pasta in a rainbow of colors!

Fantastic-looking meat case!  And this is when I was busted for taking pictures!

So we went in search of some true Parisian boutiques and were rewarded when we walked into Julie & Cie.  The saleslady couldn't have been more helpful, Christine loved the styles and bought dresses and I bought a couple of cute tops.  It was nice to find clothing with Paris labels!  And the sales ladies were enchanted by Christine's perfect figure.  Everything she put on looked fabulous (oh, to be young and a size 2 or so!).  "Tres jolie" they said repeatedly!  Rick and Alli stayed just out the door as the shop was tiny, and gave their approvals as she modeled for them.  Then we proceeded down the street to another little shop, similar to this one, where we contributed a bit more to the local economy.

It was time to eat and we went in search of one of the supposedly top ten bistros in Paris.  We were in the neighborhood, so we made our way and found it - closed.  Like permanently closed.  There were other options but it was getting late for a Parisian lunch, and our first choice told us it was too late.  We made our way to another bistro and luckily, they were still serving. 

Feeling adventurous, I ordered steak tartare.  And we shared an appetizer of escargots.  The escargots were ok, I loved the tartare.  Everyone else's meal was just OK, if I recall.  Rick ordered a burger that I think our server forgot about, as it came out well after everyone else had been served.  I think this wa the only service mishap of the trip.  The waitress seemed stressed out and I think there may have been a bigger lunch crowd than normal.

Back to shopping involved a taxi back to the Champs Elysees.  It was Saturday night and the street was busy, including at least a couple of bachelorette parties.  One of them was having a scavenger hunt and I was invited to dance with the bride (must have had "dance with a mother" on the list!) 

Christine was accosted by another party to accept a swat on the butt and pay a couple of euros for the "pleasure".  

It's either a clever scam or an interesting way to help fund a wedding.  In any case, it was cute and clever.

Rick and I decided that we'd had enough, so we found a table in an outdoor cafe and I ordered a very expensive but absolutely delicious mojito.  I'm sure it was the best one ever, and for 14 euros, it should have been!  And it had plenty of ice...but in this case, more mojito and less ice would have been appreciated.  The girls shopped and we people-watched.  And then we got quite a show...the local gendarmes arrived along with a fleet of tow trucks.  Apparently, we were sitting right in front of a "no parking" zone and it was time for the cops to generate some revenue.  Paris cars are tiny - in some cases the Smart Car" looks big by comparison.  So the cops were able to use some wheel dollies and manually push the cars out enough to get them attached to a tow truck, then take them away.  It was amusing to watch, not so amusing if your car was one of their subjects.  In a couple of instances, the drivers returned in time to prevent the tow-away.  That was also fun to watch as the drivers negotiated with the cops, paid their fines on the spot, and reclaimed their cars. 

Talk about how to ruin your least one of the cars was clearly marked as a rental!

The girls returned, enjoyed a quick beverage, then were off again to shop until the stores closed.  Allison was having some success and the girl were enjoying sister-time.  We were enjoying relaxing, people-watching, car-towing time so everyone was happy.  We were back at the apartment around midnight.

Sunday morning came, the girls were packed, showered, and ready to head to the airport.  The pre-scheduled van taxi arrived exactly on time and they were off.  We relaxed for a while and then headed to Brasserie La Lorraine for brunch.  It was Mother's Day in France, and the restaurant was pretty full - of older Parisians, actually.

Image Detail

We had walked by this places many times while heading to the taxi stand, so it seemed right to have a meal there, if we could get in without a reservation.  We were seated right away, between two couples that had to be in their late 70's or early 80's, the waiter immediately caught on to our need for an English menu, and we settled in for what turned out to be a rather fun meal.  The gentleman on Rick's left asked if we were British or American, Rick responded and the guy started speaking to us in pretty good English.  Their appetizer arrived - a platter full of fresh oysters. 

While I love most seafood, raw is not my thing and oysters are not my favorite in any form. Nice to look at and they seemed to enjoy them. Rick ordered French onion soup and I got a very delicious fish soup - more like a bisque - that was served with some croutons and a mousse of some sort. I have no idea what it was, and I didn't even know quite how I was to experience the whole thing so I asked the waiter and he spread some of the mousse on the crouton, plopped it in my soup and then onto my spoon. Voila! I soon learned that it was even better if I let the crouton sit there and absorb some of the soup before eating, it all made sense.

For my second course, I had ordered a warm and cold salad.  Rick ordered steak with frites.  For some reason, I wasn't very hungry and had suffered a little intestinal distress earlier in the day, so I was trying to eat lightly. 

Our neighbor told Rick that Parisians don't eat French onion soup but he approved of my fish  And then their food arrived - a sea bass encrusted with salt.  It looked spectacular, I wish I had taken a picture.  It was on a gigantic platter and the tail was wrapped in foil.  It was presented to our neighbor diners, then taken away to be plated.  It was served with delicious melted butter, not drawn butter as we would see here but creamy whole butter.  I ooh'd and ah'd and the gentleman grabbed Rick's fork, put some of the fish on it along with the butter, and handed it to me.  OMG, it was sublime!  And their accompanying "potato puree" served in a little cast iron pot was equally delicious.  

the salt-crusted fish was delicious - but for the 70€ we would have been better off with other d

The gentleman suggested we change our order but I said something about my "petit appetit" and that Rick liked his "boeuf" so we waited for our food to arrive while they enjoyed their beautiful fish.  When our meal arrived, they asked about Rick's frites.   The wife, who spoke not a word of English, told her husband that Rick should not eat them, they were no good.  The gentleman asked if the frites were good, Rick indicated they were "so-so" and before we knew what had happened, the waiter appeared, had a conversation with the gentleman, and Rick was instructed to select a different side dish.  Having tasted the potato puree, he ordered the same and they arrived in no time.  Much better selection! 

We finished our food, they consumed all three courses - the oysters, the fish course, crepes for dessert, strong French coffee and a "digestif" - a cordial to us.  I was amazed at the amount of food that Parisians, even elderly Parisians, can consume in one sitting!  The couple on the other side of us did the same thing.  And anyone who says the portions are smaller hasn't looked in a while!  One dessert was 3 scoops of sorbet with berries.  One scoop would be reasonable, but 3?  I guess they just walk it all off!!!
And then it hit me...I was not feeling well at all, realized I had a fever, and had a burning desire to get back to the apartment, take some Tylenol and lie down.  So that is what we did.  I spent the afternoon wrapped up in a comforter watching Queen Elizabeth's jubilee flotilla, and hoping that I recovered quickly.  We had reservations for a dinner cruise and it was pre-paid.  So whatever bug had a hold on me needed to release its grip in time for dinner.  I took a little nap, relaxed, let the drugs do their thing, and managed to get up about 6:30 and dress enough to go out.  No makeup, just earrings and clothes, it was all I could manage...ugh!

We took a taxi to the boat dock and boarded the Cristal - part of the Bateaux Parisiens fleet.  It was a lovely evening and I was so glad I felt good enough to do this with Rick. 

It was a lovely evening, the food was pleasant and I was able to enjoy the meal, the couples to our right spoke brilliant English (one couple was from MA and the other from Scotland) and we enjoyed the company.  The lights of Paris were lovely and this afforded me a full view of the Eiffel Tower when it sparkles on the hour.

It was a wonderful way to spend our last night in Paris.

Monday morning was cloudy and a little rainy - the one and only day where the sky wasn't blue by the time we were up and about.  For us, it didn't matter as we were off to the airport at 10 a.m., with beautiful memories.

Here are some random pictures:

The stairwel of our 1930's Art Deco apartment building

The elevator in our building

Our Parisian street
A peak inside the apartment