Monday - Day 3

And we were off to the Eiffel Tower.  We arrived about 11:30 and made our way around the grounds, took our required pictures, then made our way to Le Jules Verne for our 1:00 p.m. reservation.  A private elevator whisked us up to the second floor, but send hubby back to our apartment for a wardrobe change.  He was in neat golf shorts, but they didn't allow men in shorts...lol.  Sloppy jeans or shorts on women were OK, but the golfing shorts with a polo shirt didn't meet their dress code.  Luckily, he found an efficient taxi driver who got him back to the apartment, waited while he changed, and delivered him back to the restaurant in just about 20 minutes. 

Here we were in the Eiffel Tower and we had to wait, so we ordered pink champagne and toasted being in Paris, in the Eiffel Tower, and enjoying some absolutely fabulous weather.

Rick returned, he ordered his champagne, and we proceeded to enjoy an absolutely fabulous lunch while taking in the view.  The service was spectacular, the food was memorable and the desserts were just ridiculous! 

The desserts were masterpieces that you almost hated to disturb, and they tasted as good as they looked.  But we were so full that we could really just sample them.  By the way, in that little white bowl is a mound of homemade marshmallows!

After our two hour dining experience, we went outside to take pictures and enjoy the view.  Allison was not allowed to ascend to the top, so we parked her in a good spot and the rest of us took the lift the rest of the way.  Once you get off the lift, you still have a stairway to climb to the "top" or as far as you can go.  It's nice to say we got to the top, but the view wasn't really any better than what you get at the second level.

Les Invalides - view from 2nd level of Eiffel Tower

Here we are at the top of the tower

After coming off the tower, we walked down to the river and hopped on a boat cruise for a one hour narrated tour.  It was relaxing and a nice way to top off our day. 

We returned to our apartment to relax, then we all decided that we needed dinner.  It was probably about 9:30 or so and we all craved crepes.  So the wonders of the internet, we found a little place called Mumbles about 3 blocks from us.  The reviews we read were promising so we took off hoping the food would be as good as the reviews.  We were not disappointed - it's a neighborhood place, not unlike a local pizza joint, with about 4 tall tables and stools.  They deliver crepes the way pizza is delivered here in the US...well, almost, as they use bikes instead of cars.  The menu was in French, but one of the delivery guys helped us figure out our order.  Each crepe was made individually and delivered right out of the pan, fresh and delicious.  So in the same day, we had the most expensive and probably the least expensive meals of our trip. 

These crepes are so worthy!  They tasted as good as they looked!  Highly recommend!

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Paris, Day 2 - Sunday

Rick and I got up before the girls and headed out on a search for pastries and a few groceries.  We thought we'd get coffee to go at the pastry shop, but that is a rarity here in Paris.  You just don't see people walking around with Starbucks or DunkinDonuts, like we staties do.  So after we found the pastry shop and had selected some pain au chocolat, raisin pastries, croissants and a baguette, we headed to the little market for coffee, yogurt, fresh strawberries and a few other necessitities.  We went back to the apartment, made coffee and enjoyed every morsel of our continental breakfast.

We had a date with "Christophe" from Paris Greeters, who showed up promptly at 11 a.m.  He helped us travel by bus to the Latin Quarter, where we walked along streets full of shops and restaurants, past the Sorbonne, and the site of the Roman Baths which is now the Cluny Museum. 

After a nice lunch at Cafe Le Dante (see the Croque Monsieur and the Caprese salad above) we made our way to Notre Dame.  It's just a magnificent structure, and it's hard to imagine how something like this was created without power tools.

After viewing Notre Dame, we checked out the bridge covered with locks of love.  Tradition says that if you attach a lock to the bridge and drop the key into the Seine, your love will last forever.   I understand that true Parisians are not all happy about tourists "trashing" their bridges.  This is just a tiny sample, and I can see their point.

we made our way back to an antique market we had seen earlier in the Latin Quarter - easier said than done.  We thought maybe there would be local artisans, crafts, etc., but it was truly an outdoor antique shopping area.  We spent a few minutes looking around, then spent a lot of minutes looking for a taxi to take us back to our apartment.  We were way too far to walk, we were exhausted, and we were relieved when we finally found a taxi stand.  (Note to self - take taxi company number with you from now on!)

Back at the apartment, we took a break and changed clothes.  It's been very warm and sunny here during the day, so the clothes that started the day are not necessarily the ones that go to dinner at night!  Speaking of dinner, we finally went out in search of something not too heavy at about 10 p.m.  Now you know we really are on the Parisian schedule.  They tend to eat really, really late by American standards.  We found ourselves at Le Clement, which was only partially busy.  But we didn't have reservations so they had us wait for about 10 minutes, then they seated us.  The food was just OK...not as interesting as the decor in the entrance, where they had covered the ceiling in different size copper pots, with big lids serving as door handles.   This picture is from Le Clement on the Champs Elysee (not where we ate). We didn't realize at first that it was a chain restaurant. We noticed a difference from the other cafes/brasseries that we have tried. There are so many cute little places, there is no need to go to a chain restaurant. Lesson learned!

Bonjour from beautiful Paris - Day 1

Allison and Christine waiting to board Air France

Lunch at Le Diplomate

We arrived safe and sound Saturday morning, made our way through Immigration and were settled in our apartment by about 9:00 a.m.  We took a two hour nap, then everyone cleaned up and we went out for lunch at a Cafe a block away from our place. 

The food was excellent and we lingered, enjoying the atmosphere and taking in the local culture.  It's so nice to see families dining outside, even the children greet each other with cheek-to-cheek kissing.  Lucky for us, there was a waitress who spoke enough english to help us with the menu.  We heard that the best food is in restaurants that
have an english version at hand, they are not catering to tourists.  This was definitely a neighborhood French cafe.

Arc De Triomphe

After lunch, we strolled over to the Arc De Triomphe.  The weather was beautiful and it's a holiday weekend here in France (Monday is Pentecoste Lundi - a religious-based holiday).  So the crowds were big, the lines were long and we couldn't figure out how to get the wheelchair across the Champs Elysee.  So Christine and I went through the undergound tunnel and walked around the plaza.  We'll try to go back mid-week after we figure out how to get Alli and her wheelchair across the crazy road.

Toyota Hybrid Concept Car

We spent a couple hours walking the Champs Elysee, drooling over the fashion and other interesting sites.  One of the cool sites was the Toyota showroom with a couple of their concept hybrid cars.  We all thought this one was just amazing!

Rose in Park Monceau

After dinner, we went to the Parc Monceau, which is just a short walk from our apartment.  It's fascinating that it doesn't get dark here until around 10 p.m.   I took this picture at 9:30 p.m., just amazing!  It was nice to walk off our excellent dinner, enjoy the park, and be in awe of the number of people who were still in the park when the whistles blew around 9:50, indicating that people should start to leave.  Speaking of the picture above, I have to say I've never seen such beautiful, huge tea roses.  You could smell them the minute you walked into that side of the park, and it was just a beautiful experience.

After leaving the park, we went back to the apartment.  We had made it through our first day here with the intent of seeing a site or two and getting adjusted to the time zone as soon as possible.  I think we can say "mission accomplished."  We all retired for the evening around 11 p.m., happy to be in this fabulous city and ready to enjoy every minute.

Entering the "no cancer zone" Paris, here we come!

In just about ten hours, Rick, Allison, Christine and I will board Air France flight 337 with nonstop service from Boston to Paris. Ooo-la-la!!!

Planning this trip has been so much fun and I am so excited to be finally heading to the City of Lights, Love, Art, Culinary Excellence, History, where we will arrive at about 6:30 am Saturday morning.

We have had an excellent experience with the booking agency for the apartment we have rented on 3 Rue Des Renaudes. Fortunately, the apartment will be available for us as soon as we arrive and there will be no delay in taking possession. Here's a link to pictures of our home away from home for the next nine nights:

http://www.lodjee.com/dreyfus-3-bedrooms-champs-elysees-paris-apartment

We must have lucked out, though. We are paying much less than the current advertised price for this 1800 sq ft flat (much bigger than our lake house). And I must compliment the rental agency Lodjee and our agent who handled our transaction - everything has been very smooth. If this place is as nice as it looks, we are going to be very comfortable. How lucky that I booked a place with a modern "lift" and a backup elevator should the main lift malfunction. With Allison's broken knee requiring a wheelchair and crutches, we might have had a big problem in the original hotel we had booked, which would have required us to go up a flight of stairs.

We don't have too many things pre-planned for this trip. Everything I have learned suggests that a loose schedule is the best way to approach a trip to Paris. There are a few things, though, where a commitment was necessary:

On Sunday at 11 a.m., we are being met by Christophe from Paris Greeters, who will lead us on a three hour tour. We don't know exactly what he has planned for us (part of the fun, really) but I indicated our interest in fashion, food, history and architecture. By the way, this is a free service run by volunteers. They suggest a donation to their organization, easy enough!

On Monday at 1 p.m. we will have a swanky lunch at Le Jules Verne, on the second level of the Eiffel Tower. After enjoying our meal, we will take the elevator to the top of the Tower and enjoy the fabulous view. We might have a little hitch with Allison being on crutches and/or in a wheelchair. We'll have to see how that goes - she read something on the ET website about handicap accessibility, and we might need to be her human crutches so we can get her up there.

Tuesday's plan is to take the Eurostar from Paris to London for the day. We all agreed that we wanted to do this, even though it's sort of crazy. It's a 2 hour 16 minute trip and our train leaves at 7:43 a.m. and requires us to be there 30 minutes early for passport control. We gain an hour of time heading west so we'll be able to take advantage of the extra time to enjoy a little of London's flavor.

That's it for pre-planned fun. We were waiting for the weather report before deciding on bike tours, Segway tours, and a cruise on the Seine. With the fantastic weather being predicted, I suspect we'll do the boat cruise on Saturday evening. It will be a nice way to see the lights, get oriented, and enjoy a bit of the romance of the city. We are within walking distance of the Arc de Triomphe so that will be one of the first things we do, maybe Saturday afternoon when we recover from the plane ride. We will visit Le Louvre and Tuileries Gardens, Versailles, Les Invalides, Notre Dame, Sacre Coeur, and Musee D'Orsay. And we plan to eat crepes from the crepe stands, sample macarons, croissants and pain-au-chocolat from the local boulangeries, sample local cheeses and drink a lot of wine!

So it's time to hit the shower, pack up the toiletries, drugs and electronics, and make sure everything is ready to go.

Paris waits for us!!!

Prescription drug "benefit" that defies any logic

We stopped at CVS today to pick up my prescription for a sleep aid. Yeah, I really do need one to get a good night's sleep and I'm sure everyone can understand why that might be necessary. My doctor calls in the RX for 60 7.5 mg capsules of Temazepam (Restoril) with instructions to take 1 or 2 as needed for sleep. I usually take just one, and until last week I wasn't taking them every night. The pharmacist checked our insurance coverage and learned that Express-Scripts (who is our pharmacy plan manager) allows only 15 capsules every two weeks, for the same co-pay as a monthly supply. We asked what the cost would be if we paid out of pocket for the full one month supply - $430!!! But get this, if my prescription is for 15 mg capsules, the cost is $14.50 for a 30-day supply, even without insurance coverage! How dumb is this? I wanted to stay on the lower dose, and take two capsules once in a while if I really need the additional help. But it's 30 times less expensive to accept the 15 mg strength...apparently hardly anyone uses the half dose capsules. The helpful pharmacist will call my doctor tomorrow and they'll figure out whether to call Express-Scripts and get an exception approved, or just go ahead and give me the stronger dose. Apparently, it's not impossible to shake the capsule, remove some of the drug, then put the capsule back together. Maybe I'll buy some empty capsules and split the dose and make my own 7.5 mg capsules. You gotta be kidding!

Pretty good news, all things considered...

We just got home from Dana Farber and I think we are feeling encouraged by her impression of thngs.  My tumor load is very small, thanks to my insistence on frequent tumor marker testing and follow-up PET/CT scans.  Dr. Chen tried to feel the nodes that lit up the PET, and she couldn't - they are still very tiny. 

We talked at great length about clinical trials and there really isn't a good one for me at the moment.  We discussed using Carboplatin or Xeloda, and decided that Xeloda was the way to start.  It's an oral chemotherapy with supposedly minimal side effects.  I'll start taking it when we return from Paris; and after two months, I will be scanned again to see if it is working.  If so, I'll continue on it until... who knows.  If the mets are still present or if there is any progression, we will move on to Carboplatin. 

I think the best way to describe this is that it will be treated like any other chronic disease.   I have diabetes - I take daily metformin; I have metastatic breast cancer, I'll take daily chemo.  

Let's hope that like a fine broadway musical, Xeloda gets a nice, long run!

We are only given today and never promised tomorrow...

I've been trying to figure out a good way to start this off; and the right words have escaped me.  I saw the graphic above on someone's Breastcancer.org post and I thought it might be a good message to start with.

I got the results of my PET scan from last Friday and it's bad news. Really bad news. I have metastatic breast cancer, Stage IV if you will. Here are a couple of excerpts from the formal report:


Neck: A few subcentimeter hypermetabolic left supraclavicular region lymph nodes are seen, new from the prior exam.

Abdomen/pelvis: There are a few small ill-defined foci of increased activity seen along the inferior edge of the left lobe of the liver not seen on the prior exam. It is not clear if these relate to activity from adjacent bowel or relate to small/early liver lesions.

Chest: There has interval appearance of several bilateral pulmonary nodules demonstrating metabolic activity, consistent with metastases. The largest is seen inferiorly in the left lower lobe measuring a centimeter in size. There has been interval appearance of a 1.3 cm area of hypermetabolism in the posterior mediastinum compatible with a metastatic node. A new approximately 2 cm hypermetabolic lymph node is seen in the high deep left axillary region.

IMPRESSION: Interval appearance of pulmonary and nodal (axillary, supraclavicular and mediastinal) metastatic disease. Some activity is seen along the inferior edge of the left lobe of the liver and it is difficult to discern whether this relates to early/small liver metastases or adjacent bowel activity though bowel activity is felt to be more likely.  

I have an appointment this Friday with Dr. Wendy Chen at Dana Farber.  She is the first DF oncologist I met with a year ago.  My local oncologist said that Dr. Chen will probably recommend a course of chemo using platinum drugs, which have been shown to be more effective against triple negative breast cancer.  We will also explore clinical trials.  I have seen a couple that appear to be worth considering. 

Some of you know that we are planning a trip to Paris, leaving a week from Friday (5/25).  The trip is on regardless... I feel fine, I'm hopefully getting my knees injected with steroids on Monday so I can walk pain-free, and we'll be pushing Allison around in a wheelchair, which will force us to take our time, take it all in, and make some beautiful memories. 

Speaking of Allison and a wheelchair, here's the story...she fell last Saturday while we were walking from her graduation ceremony to a reception in a park two blocks away.  She had on sensible shoes but hit some uneven pavement, her left ankle rolled, and her right knee took the full force of her fall.  It's a clean fracture of her kneecap, but debilitating nonetheless.  She is using an immobilizer and crutches and learning more than she ever wanted to know about handicap accessibility.  I am staying with her during the day to make things a little easier.  And fortunately she is able to work from home, so things are OK. 

So getting back to my situation, I'm prepared for another round in my war against this nasty beast called breast cancer.  Two years ago I didn't think I had it in me to take what comes with treatment, but I've learned a lot about myself, my own strength, and the strength that comes from loving family and friends. 

Breast cancer just doesn't let you forget...

It was a nice little "honeymoon" of no tests, treatments, doctor appointments and all the other "stuff" surrounding breast cancer.  But, I guess the party is over for the moment and I'm back to the waiting and worrying games. 

I saw my medical oncologist this past Wednesday and she ordered the routine lab work, including the CA 27.29  tumor marker test.  I got the results on Friday (such a nice little birthday present) and my markers have gone from 31 to 55.8.  With normal being below 38, I am now scheduled for a PET scan on 5/11 to see whether or not more trouble is brewing.  Many oncologists don't order this particular tumor marker test, because it has a nasty habit of giving false positives.  For me, it has tracked with cancer activity so it cannot be completely ignored.  I feel fine, no unusual aches or pains, my metabolic panel and CBC labs all look very nicely routine, and there is nothing that seems suspicious.  Except the tumor markers. 

As a family, we are getting good at "compartmentalizing" this stuff.  Anyone remember the press using that word when President Clinton was going through the Monica Lewinsky debacle?  Everyone wondered how he could focus on being president and they talked about his ability to block it out.

"Compartmentalization is an unconscious psychological defense mechanism used to avoid cognitive dissonance, or the mental discomfort and anxiety caused by a person having conflicting values, cognitions, emotions, beliefs, etc. within themselves. Compartmentalization allows these conflicting ideas to co-exist by inhibiting direct or explicit acknowledgement and interaction between separate compartmentalized self states."

Yup, we're all getting pretty darn good at this.  Or you could call it floating down the River DeNile.  In any case, I'm doing a lot of fun things and not letting this get in the way of living my life.  And taking a sleeping pill at night when it's much harder to distract myself from the obvious anxiety. 

On a much lighter note, I had a fabulous birthday celebration with my family.  It's the first time that I've been able to celebrate with the grandkids, and it was a blast!  They enjoyed the Japanese steakhouse and cooking show.  And afterwards, the kids and I hit a local karaoke bar for some dancing and singing.  Hey, it's pretty cool that my kids are willing to be seen in public with me on the dance floor!!!

Our trip to Paris is coming together nicely.  We will leave on May 25th and return on June 4th.   I am going to start a separate blog with trip details, plans, what to see and do, pictures and food/restaurant reviews.  Oh yes, it's going to be magical!