Another Day, Another Treatment Plan

Today is Sunday, sunny but very cold; temperatures going down to the single digits tonight.  This morning Thierry said he was sick of winter.  I reminded him that it is one-third over.  So for those of you who are suffering the winter blahs, keep that thought in mind.

I received a call on Friday that my new treatment has been approved by the health insurance provider.  I will be getting a brand new, just on the market a few months, drug called Halaven.  It is so new that none of the nurses I have spoken with at the infusion center have administered it, and they don’t have a supply at the hospital pharmacy.  They do expect to have it by Thursday so I can begin treatment.  Also because of its newness, no one knows what the side effects really are.  In looking on line, it appears they fall in line with the rest; hair loss, fatigue, nausea.

The treatments will be administered two weeks on, two week off.  Apparently it is an injection given intravenously (as opposed to a slow drip).  This is a good thing as it means my time at the infusion center will be greatly reduced.  Then it will be about settling in to the new normal.

I have to say the response from my new doctor has been terrific.  She did explore trials to see if I could get into a Parp study.  Unfortunately, the only study combines a Parp with carboplatin – which I developed an allergy to.  Although they say some people can be desensitized to the drug, they refused to include me in the study.  I have decided it is time to get a second opinion, and have selected a doctor at Penn to contact.  We’ll see where it goes.

This is the first time I have not read my test results.  I really don’t want to know what they say.  I remember when Mike’s mother was going through treatment for lung cancer.  There were a lot of questions I don’t think she asked.  I thought then that I would want to know everything.  And, up until know, I stayed on top of everything.  I am not exactly sure what changed.  I guess it’s about knowing what the outcomes ultimately are, and trying to maintain hope that we will beat the odds. I can’t focus on living, if I am focused on dying. 

So, I’ll focus on exploring options for living – and trying to live each day the best that I can. 

The New Normal

Sounds like a subject philosophers could debate for a long time. What is normal?

When we were in New York recently my son-in-law asked me how I felt. I said fine, I guess; but what I really want to feel is normal again. By that I meant how I used to feel before chemo.

Before chemo I could wake up in the morning and jump out of bed, get my shower, start breakfast, make the bed and begin my day without hesitation or pause. I could eat whatever I wanted without a care (other than worrying about fat content or calories or sugar). I could get up early and go to a meeting, walk to and from appointments and shopping trips, pick up last minute and go do whatever – dinner, movie, a concert, even stay up until midnight, one o’clock. Doing all this and feeling - well, good. We didn’t hesitate to plan trips and go when we got the urge.

During my first course of treatment, I had to be at the infusion center every week for three weeks, then had one week off, so things had to be planned around this – very doable. Other than one day of minor nausea and tiredness, the chemo didn’t debilitate me that much. I could even walk to and from the infusion center in all weather. We did take a trip or two when I could arrange it around a break in treatment – and twice actually took a week off of treatment. There was some neuropathy which was not debilitating, and for the most part, things hummed along.

Then I started the new chemo regiment which meant going to the infusion center once every three week, but taking chemo pills for 14 days, leaving one week to “recover” before the next trouncing. This chemo inhibited my ability to walk as much as I used to including using the treadmill at the gym. I was constantly tired, so tired that just the thought of going to the gym seemed like a major hurdle. It takes me many minutes to actually get out of bed and over an hour to get dressed. I rarely utter a word to Thierry for the first hour or so after I get up. Often I have to sit to deal with the regular morning headaches that sear through the right side of my head and neck.

My diet changed dramatically because my mouth became so sensitive, including the onset of mouth sores which I never had to deal with before. I am usually in bed by 10:00 and rarely get up before 7:30. I don’t like to make plans in advance anymore because I am not sure how I will feel – although we do have reservations for a stay in upstate NY in February (I am so determined to go). I still managed to work but timed meetings carefully to ensure I’d be physically able to make the meeting.

So as I began to accept this new normal and adapt, I learned last week that the chemo is not working. My substitute oncologist (who I like) is looking for an alternative chemo to start either this week or next.

I guess what I am learning from all of this is that feeling normal is relative… It’s just how you adapt to how you feel and decide that you can still live and enjoy life, within its limitations. But I still miss those nights of drinking and laughing until 1:00 in the morning!

Somtimes a Simple Thank You is all it Takes!

Since it is the new year, I thought I’d write about something that everyone could add to their resolution list. That is, to say Thank You.
Something so simple, yet it seems that today certain courtesies are expected and don’t warrant acknowledgment. Or perhaps people are so preoccupied with getting somewhere or acting busy, that saying thank you is the last thing that comes to mind.

Times when people fail to say thank you include:

• when you hold a door for another person – although there are many people who are oblivious that there is someone behind them and they let the door slam on you, or again are in such a rush that they just let the door fly wide. 
• when you step out of the way – or make way – for a person to get through a small area; particularly for a person pushing a stroller or for a person in one of those automatic wheel chairs. Seems that both of these groups believe it is their right to make headway since they are in some way attached to a wheelie thing.
• when a waiter brings you something you asked for – or not. Seems many people feel that it is a server’s responsibility to take care of them while drinking or dining out and that the tip is thanks enough. I find if you recognize their routine efforts, waiters tend to be much more attentive and pleasant. 
• when you ask someone to bring you something – like your husband, daughter, sister, etc. Maybe being close to a person causes us to feel the thank you is assumed. It seems that older people especially feel it is their right to ask others to get them things and the thank you isn’t really considered. 
• when someone stops to let you pull out into traffic from say a garage or parking space, or lets you merge into traffic. I remember when I was little I wanted to be the one to wave and thank the other driver. Where did that go? It is even rare these days that people are so willing to let you in, even in a tight merging situation that often you don’t get the opportunity to say thank you. I like to do the wave – probably because I truly am appreciative when someone lets me in because it is so rare.

There are many other incidents and stories I am sure you are thinking of and can share relative to this topic. The last bullet was actually what caused me to write about it. People behind the wheel tend to be very unfriendly, preoccupied – especially when on the phone, and always in a rush. Maybe if we all slow down a bit and be more present, we’ll remember to say Thank You!

But there are times when saying thank you can seem trite; like when someone rubs your feet or leaves little packages of goodies at your door or secretly sends a book to your Kindle. How do you show your appreciation for those who go that extra length to make your life a little better. I’m working on that one.

The tree is down, the weather is cold and more snow is expected during the week. My goal is to get myself out of the house no matter how rotten it is. It’s been a busy but good week.

Bringing in the New Year



Annual Photo
 (All part of the Spain Trip contingent except Mom)

Happy New Year! It is already the 2nd and the year has started off on a good note – I feel good today! Even went to the gym.

I won’t write about making resolutions, I did that last year. The only observation I will make is that over the last two days I have seen in the paper and heard on NPR news people making resolutions for others. Editors and so called experts making resolutions for everyone from Angelina Jolie to Ben Bernanke. WHO CARES!

We have had a wonderful holiday. I dreaded the thought of getting chemo on the Thursday before Christmas. I would have asked my doctor if I could skip the treatment, but I didn’t get to see her. She was in a bad car accident and will be out of commission for a good while (dread!). I did manage to get an appointment for this month with a young oncologist I heard speak at one of the conferences I went to and am quite happy about that.

During my treatment we had a few visitors. Lisa R came for a bit, then Lisa M and Barbara H came and we played scrabble and snacked on Barbara’s wonderful cookies. Lisa wanted to give me a foot massage. Reluctantly I agreed. I admit I felt awkward; first in having a friend spend her time pampering me and second, because my feet are so awful from the chemo. What a wonderful treat that was! These visits give Thierry a break and help the eight hour treatment day go by quickly. I left in a great mood which lasted for several days. I was surprised at how good I felt the days following – better than I had after all the three previous treatments.

We celebrated Christmas Eve at home, having a spaghetti and clams dinner with Barbara and Barry. Kirk and Lisa joined us for drinks and Lauren and Mike came over to spend this night. On Christmas Day everyone rallied around and we had a great time and lots of food. I made another venison stew, Ann brought shrimp, Koniko made her incredible sushi, Jean made sautéed mushrooms with garlic and hot peppers, Joan brought snacks, Lisa made the salad, Lauren brought the Yule log! Joan also brought a game which kept us entertained for a bit and the conversation flowed. Lauren and Mike stayed over again Christmas night – another wonderful treat. Lauren and I fell asleep on the sofa watching the Wizard of Oz. Mike gave Thierry and I our most prized gifts of the season: a radio controlled helicopter for Thierry and a foot massager for me! We have used them every day since.

The first snow of the season fell on Sunday, close to a foot. We got a call that afternoon from Barbara, who suggested we all meet up at a bar for drinks then head to Lisa M’s for dinner. Normally I would have bowed out, but decided I wasn’t going to miss the fun of a first snow again (last year I hunkered down while Thierry went out). I was very glad I did, and managed to last for quite a while – although I was in bed by 10:00.

I had two days of meetings during the week and am thrilled to be working with an old chum that I haven’t seen in a couple of years. The project, if it goes off, should be a fun one, and working with Marian will be a wonderful experience.

We had dinner twice with my sister and her friend Teresa from Spain, who spent several hours over the week working on my feet.

Thursday was the family wine tasting. My brother and his wife came for the first time, which made it even more of a special event. The wines were from different regions in Italy, a sparkling, two whites and three reds. The food gets more creative and plentiful every year. Another great party and everyone seemed to be pretty sober when they left.

Friday morning I had a meltdown. Maybe it was all the activity that occurred during the week; maybe it was too much booze, perhaps the chemo. On top of that it was our second wedding anniversary so the guilt of being short-tempered and cranky only made me teary and more frustrated. Thierry and I went for a walk and picked up a scrumptious pound cake made by a friend of ours. It was good to get out in the fresh air and relatively warm weather. When we got back, I took a long nap. Feeling much better when I got up, we went out to dinner at a local restaurant to celebrate. I slept more when we returned, waking in time to prep a few things for New Year’s Eve. A few friends stopped by to join us in bringing in the New Year and watching the fireworks from our condo.

On New Year’s Day Thierry went to the Mummers parade while I went to join in a farewell lunch for Teresa who was returning that day to the Canaries. We will miss her terribly. Lisa M (what an angel) wanted to do my feet again, so she and Barbara came over and we played scrabble, which Barbara won, and I got a great massage. I awoke today feeling incredibly good and, as I mentioned, went to the gym for the 2nd time in about two months! I think the foot massage has more therapeutic powers than I realized.

If the year continues the way it started – it is going to be an outstanding one!

Merry Christmas

Merry Christmas!



I wish all of you a day filled with friends, family, fun, too much food, lots of booze and much love!

Holiday Cheer

I was all prepared to sit down and use this entry as a bitch session, but last night I went to bed feeling pretty good and spent some time reflecting on the week.

Sunday we (almost the whole clan) had dinner at Lauren & Mike’s house so we could see their incredible tree and Christmas decorations. She made wonderful turkey meatloaves and Jean brought a cake to celebrate Thierry’s birthday, albeit a bit early. We all had a great time.

Monday I worked a bit and had a wonderful massage. Not feeling well over the past month and being cold all the time, I found myself constantly in a crunched up position. My neck and shoulders ached terribly and I felt that it had to do with my bad posture as well as the neuropathy. The guy I went to was wonderful! When he worked on my neck and around my shoulder blades you could hear things crunch and pop. I had to ask myself why I waited so long, and signed up for another session next week.

Wednesday we met Lauren and Mike at the train station and we all headed up to New York. The main purpose for the trip was to see John Stewart and a taping of the Daily Show, one of our favorite TV programs.

When we checked into our hotel we were given the option of getting a suite rather than two separate rooms. It was a great idea which we took advantage of. We had a two-bedroom, two-bath suite with a kitchen area, complete with an oven, microwave and refrigerator.

Shortly after we put our clothes in our rooms we took off for lunch and then went to the Guggenheim – one of our favorite museums in New York. Lauren and Thierry walked and Mike kept me company in a cab – my days of long walks are, unfortunately, over due to the neuropathy in my feet. The gallery had a show called “Chaos and Classicism” which looked at Italian, French and German art during the period between the two world wars. The exhibit was intriguing, and they had some magnificent early Picasso pieces that I adored. There was also a gallery of Kandinsky works from the period 1922-1933, another favorite.

After enjoying the exhibits, we taxied back to our hotel. We picked up beer, wine, cheese and olives and relaxed in our suite before heading to Tribeca. There we had a good dinner at Locanda Verde, a restaurant partly owned by Robert De Niro.

Thursday was the big day, when we were to see John Stewart. After breakfast we took a walk in the neighborhood and found a furniture store that carries a chair I was anxious to show Thierry. I thought it would make a great addition to our living room – especially since the chair we bought just four years ago seems to be falling apart. We ended up buying two and delivery is scheduled for January. I am so excited! They actually are recliners – but don’t look like recliners. Yes, I am at that stage where I need a recliner!

Everyone walked me back to the hotel then took off for Rockefeller Center. After their power walk, everyone met me at Macy’s. We walked around a bit, but it was bitter cold the few days we were in the City. We took a cab to Hell’s Kitchen where the studios are located and found an Irish Pub to warm up in.

 We had lunch and drinks (not Lauren, however) which made the two-hour waiting period to show time fly by. At one point a couple of regulars came in and the bartender started to mix Manhattan’s. Mike and I watched him, and having been satisfied that he knew how to make them, we ordered two. He made the Manhattans with Maker’s Mark (bourbon). They were great – although I think Mike is used to having his Manhattan made with Canadian whiskey. Bourbon is a little harder to get used to.

We enjoyed the taping of the show and got to see Mike Huckabee, who was John’s guest. Although I would never vote for him in any election, he can be a good interviewee. The show was a bit solemn as John wanted to talk about a bill Congress is ignoring, which would provide aid to the individuals who responded to the 9/11 attacks and are now suffering illnesses as a result.

Rather than go out to dinner that evening, we went back to our hotel, picked up some soup and egg and potato salads and brought the cheeses and snacks back out. The next and last day was a sunny one in the City, but still a bit cold. We walked around after breakfast, bought some books and then relaxed until check out.

Yesterday was Thierry’s birthday. Thierry took the Christmas Tree out of the box and set it up. I had a visit from two new house-cleaners. Oh JOY! They came in here and tore everything apart (well it seemed that way). Four hours they spent here, I am so pleased with their work. If they are willing to come back into the city – I would be thrilled to have them here.

We then picked up Kirk and Lisa and headed to the parent’s house for dinner. Jean cooked a wonderful meal with help from Ann and Joan. Juan made morcilla (blood sausage) and he found a kindred spirit in Thierry when it comes to this gastronomic delite. I did not try it but a few at the table did; some even liked it, including Thierry! Then we once again sang happy birthday to Thierry. Jean’s friend, Teresa, arrived from Spain on Thursday. Teresa is a reflexologist. There is nothing more soothing than having your feet worked on, and that is what she did. Oh I was in heaven.

When we got home, Thierry and I decided to go out for a drink – not something I do too often these days. We had a nice time at a local bar and got home before midnight. I then spent some time on the phone with my dear friend Barbara on the West Coast, getting to bed after midnight would you believe!

I went to bed with a big smile on my face with thoughts of what a great week it was!

PS:  Thierry finally got the lights to work on Curlew.  Here she is decked out for the holidays!

I am well aware of the fact that it has been two weeks since I wrote my last blog. We had visitors from Holland last week (that is excuse number one). The second excuse is that I have had a hard time getting myself to type as I have been pretty negative lately and feel that anything I write will be a downer. As I type this, I am also thinking that that is the reason I started this in the first place. Not to wax political or philosophical, but to share how I feel, both mentally and physically as I go through this treatment. It seems that I get very down a few days after my treatment – which is usually around the same time the side effects kick in.

Well, I have decided to write something and keep it positive, this time! I may write again in a few days but don’t promise that it will be a happy, life is wonderful, piece.

As I mentioned above, our friends Jeannine and Carl visited us for the first time in our new home. I think 1993 was the last time they were in the US. They are a wonderful couple who are fun to hang with. They are also very independent, and didn’t hesitate to go off and spend time on their own. I think they timed their trip well, as the city is resplendent in its holiday attire.

We took a ride out to Longwood Gardens in the suburbs to visit the only horticultural center in the Philadelphia area with an indoor conservatory. Spread over 1,000 acres, the development of Longwood began in the 1930’s by a wealthy businessman, Pierre DuPont. It had been a long time since I had been there, and was pleased that Jeannine (and Carl) seemed to genuinely enjoy the surroundings.

The weather was really quite good while they were here, with only one day of rain. Timing was also good as I had chemo on Thursday during their visit. This meant that I actually felt close to being human for most of the week. We had dinner with my folks and dinner later in the week with our friends Lisa and Kirk. They got to experience a Macy’s Christmas sale and saw the incredible show in the lobby of the Comcast Center – a must see if any of you come to Philadelphia.

They left on Saturday, and we were sad to see them go, but thrilled that they took the time to visit.

This chemo treatment went much better than the last. I guess my feeling so poorly after my last treatment had to do with being ill the week of my treatment. I have actually worked quite a bit this week, but do crash pretty early in the evening.

Thierry and I will pick up our tree from my sister’s basement this weekend (it’s a fake!), and gradually begin to decorate for the holidays. Thierry doesn’t like to put the tree up until (at most) a week before Christmas. Thierry put lights on Curlew which we should be able to see from our window – but something went amiss – maybe we’ll have a picture in my next blog.

The big news – which brings me great joy – is that Lauren is pregnant! I have pictures of the ultra sound if anyone is interest. I decided I will begin to brag now as I am not sure how long I will be able to brag when s/he is born – which may be around July 15th.

We are looking forward to a busy week. I have much work to do and we leave Wednesday for New York. We are going to the Daily Show on Thursday, which was made possible by Mike. Hopefully the weather stays around freezing (unlike our trip three years ago when it was 0oF) so we can walk and enjoy the city.

Today was a pretty good day… I’m hanging in there.