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.

Thank You

As I sit here and gaze out the window watching the snow falling lightly in the city, I am thinking about the meaning of holidays and how they impact our lives.

Today, as Americans celebrate Thanksgiving, I suppose we should be thinking about all the things we are thankful for. I am sure, however, most of us are thinking about the cooking we have to do, how we are going to fit all the people around the table or packing the car to get us to our family dinner.

Hopefully we don’t need a holiday to remind us that we can devote small amounts of time each week (month or year) remembering our parents, giving gifts of time or other resources to those in need, and finding ways to let our friends and family know how fortunate we are to have them in our lives.

As I write this I know I am remiss in thanking all of my blog followers for reading my rants, commenting and showing support as I go through my cancer/chemo experience.

Thanks to all of you. May you be surrounded by those you love and your lives be filled with joy.

The Blahs and the Blues

It’s a beautiful Sunday morning. The sun is streaming in and I have plopped my butt down on the couch to take a breather and write my blog.
I take a lot of breathers these days. Since getting back from our trip, I have spent more time on the couch than I have doing anything else. Saturday and Sunday after chemo Friday were uneventful. I felt pretty much like myself. Monday I couldn’t get out of bed, although I made a great effort. I had a business appointment at 11:30 I was hell bent on keeping. I got up, took a shower, laid down, got dressed, laid down, forced some food, laid down, then put on my coat, got in the car and drove three blocks, parked the car, called my appointment and cancelled. I drove back home, got into my jammies and went to bed.

Tuesday wasn’t much better, although I did get dressed. I just had no energy. If I stood too long, I felt like I was going to drop, so another day of lying around. Again I had little appetite, and have lost about 10 lbs in two weeks (this has me a bit worried). Thierry once again was fetching me soup, tea, etc., and made a wonderful spaghetti and clams dinner.

I spoke with my physician’s assistant who suggested I come in the next day for fluids. When I awoke Wednesday I felt worse. I couldn’t walk very far without feeling faint, and once again had no appetite. When we got to the oncology center the PA called my doctor. They decided to give me a brain MRI and lung PT to make sure the cancer hadn’t progressed. Fortunately the tests came out negative. I went to the infusion center and had blood tests taken and was set up to receive fluids. By this time I was actually feeling a bit better and able to walk without assistance (Thierry was taking me to the various offices in a wheel chair!).

The blood tests all came out normal, giving no indication of what was wrong with me. The only thing I can assume is that this was a reaction to the chemo after having been ill the week prior. The PA had nothing of substance to offer, in fact, she made comments like: “Maybe you just can’t handle chemo.” She also shared the fact that another of their patients is receiving the same treatment and “she is handling it quite well!” As if I wasn’t depressed enough, her words were pretty damning.

The PA then decided, having not looked at my ears, nose or throat – or listened to my chest – to prescribe antibiotics. She just figured I must have something lingering that was causing me to be unwell. I decided not to take the antibiotics and made an appointment with my primary care doctor. The appointment was Saturday, and he could not find anything that could be causing my malaise.

There were several bright spots that shone through this miserable week. They were my friends and family that gathered round to support me. Lauren was here twice to keep me company. Ann came to get some work done and have lunch. My friend Barbara made the most wonderful chicken soup, better than any medicine a doctor could prescribe and took me to the doctor and food shopping. Faye came over to keep me company and brought wonderful bread to go with the soup. Lisa made me a sweet potato pie to help “pump” me up. A good choice as my mouth is very sensitive as a result of the chemo. My sister came and stayed with me one night as Thierry was away two nights bringing the boat to Philly from Baltimore.

Each day I feel a bit better, but not really well – not like myself. I have been fighting thoughts about death and dying all week, convinced that this is what was happening. I am trying to force myself to do a little more each day, and may take a walk this afternoon. I have business appointments tomorrow which I fully intend to keep, and am planning to get ready for the Thanksgiving holiday.

It’s hard sometimes, but I try to remind myself I am alive today, so I’d better make it the best it can be and appreciate all the wonderful people in my life.

Westward Ho!

Finally I have a chance to sit down and write; so much to catch up with.

We left the morning of Saturday the 6th for Chicago where we were to begin a six day trip I had booked on-line for a scenic railway tour that would take us first to the Grand Canyon and then to Los Angeles.

We had two hours to kill before our departure from Chicago’s Union Station. Just enough time to grab lunch and shop for sleep-ware which neither of us packed… a good thing considering how much time I spent in bed during the trip.

We boarded and left the station on time. We had booked a sleeper car with a bathroom and shower. Our sleeper had a long settee on one side, a teeny tiny sink and counter on the other, space in between that configuration to allow for a small open area and a single seat along the window. The toilet and shower combination were in a closet behind the sink/counter. We had two fairly large windows which gave us an ample view of the ride we were about to take. One thing you notice as soon as you enter these trains is the stale odor that permeates the air.

Both of us had wanted to take a scenic rail trip, and had wanted to see the Grand Canyon – a trip I couldn’t make by car. This particular package included meals while on board the train, one night at a lodge in Williams, Arizona, (along with a meal), a trip on the Grand Canyon Railway into the park, a two hour bus tour in the park, a room at the Maswik Lodge, a return trip to Williams and onto Los Angeles which included one night at the Biltmore Hotel.

We settled into our car and claimed our territory. You are required to schedule your dinner and lunch time and had arranged a 6:15 time slot for dinner that evening. We were told that our time would be called. The view leaving Chicago was not unpleasant taking you primarily through residential areas. Then we hit the cornfields, miles and miles of cornfields that had been plowed for the winter. Dusk was creeping in, casting a golden light to the browned fields. Dusk is my favorite time of the day for the way the light falls on buildings, trees and cornfields.

We waited to be called for our dinner seating, but 6:15 passed and no call came, so we figured we would walk down to the dinning car. Well, it was made clear that we were not to come before we were called, but after a few minutes we were told to take a seat. One of the rules of the dining car is that you share your table. The booths seat four, so if you are a party of three, you may expect one guest. This is actually a good idea as you get to know others on the train and you could find yourself in some interesting conversation. Well it didn’t happen that night. We sat with two very odd sisters from Long Island who also happened to be our neighbors in the sleeping car. They were extremely chatty and Thierry told me he heard some “interesting” conversations from where he sat in our car.

The food was really quite poor. Okay, as Thierry says, the trip was not about the food; but when you are Italian, it is always about the food. I ordered the salmon and mashed potatoes. String beans and salad also came with the dinner. A good thing! The salmon tasted as if it had been processed and boiled. The potatoes were from the box, but edible. We got through dinner and went back to our sleeper. About an hour after returning, I came down with a bad case of the chills. I tried to warm and curl up on the settee, and may have slept a bit. We asked for our berths to be turned down at 10:00 and I promptly went to sleep. The next morning I felt awful. Fortunately Thierry had a thermometer with him. My temperature was 100.6. I ended up sleeping almost the entire day, waking long enough to take a peek out the window, drink liquids and pop Advils.

Thierry was on his own for breakfast, lunch and dinner – and he did, in fact, have a few interesting conversations with other passengers.

The train ride took us through Iowa, Missouri, Kansas, Colorado, New Mexico and then into Arizona. It was fascinating to see the landscape change, as Thierry put it, “cornfields changed to moonscapes in New Mexico.”

In New Mexico, hills and plateaus seem to rise out of nothing in the middle of vast fields when we entered the Santa Fe Trail. We then hit the prairies and were entertained by an entirely different landscape.

We de-boarded the train at 10:30 p.m. in Williams, where we were met by a small bus and taken to the lodge. We were the only two in the bus, which rambled up and down a pitch black dirt road for sometime before reaching the highway. We checked in and went right to bed.

Monday my fever was 101.2. Thierry was extremely concerned and wanted to get me to a doctor or hospital. I told him we were going to the GC, especially since it didn’t require any effort on my part except to get aboard another train and bus. And we learned they had a clinic there. The one nice thing about the trip was that your luggage was always taken care of – they removed it from you room, put it on the train, from there to your next hotel and then back again.

The Grand Canyon Railway which takes you to the park is charming, designed to look like something out of the 1800’s. The ride included a strolling guitarist who serenaded us for a quarter of an hour. The ride took two hours and fifteen minutes – mainly because the train travels at about 30 mph for a 65 mile trip.

When we arrived at the park our bus tour was upgraded to another which included lunch. What a treat, a buffet at a large cafeteria which consisted of a salad bar (thank goodness), ultra cheesy pasta, chicken, beef and fish in various sauces, rice and potatoes. I was craving chicken soup the entire trip – their offering was cream of potato with bacon – ick.

The tour took us along the southern rim of the Grand Canyon and we were able to get out and walk around and take pictures at two locations. As Thierry said, it was AMAZING, a term we rarely use. The sheer magnitude of the canyon, the colors, the way the terrain is sculpted and carved are breathtaking. (See pictures in photo gallery). So is the altitude! Both Thierry and I found ourselves struggling to move around our room on our second day there.

We checked in at the Maswik Lodge and I promptly got into bed. Again, Thierry was on his own for dinner. I won’t go into it other than to tell the story of Thierry smuggling a tiny bottle of wine out of the dining hall. When he bought the first along with his meal, he was told – these don’t leave the building, and the checker removed the cap and threw it away. When he picked up a sandwich for me, he bought another bottle of wine and the same thing happened. So, he snuck off into a corner, stuffed a napkin in the neck of the bottle, put it in his pocket and snuck out. Luckily he didn’t spill any on his way back to our room which was a bit of a walk from the lodge – in the pitch black. They have no lighting around the facility.

The next morning my temperature was down to about 99.5. I had an appetite and was craving a good breakfast. We choose the El Tovar hotel which is situated along the rim and had our first good meal. We then went to the clinic where they took chest X-rays, blood and urine tests. The upshot of all this was I had an elevated white count and was handed a bottle of antibiotics. We returned to the El Tovar where we had some lunch and I then parked myself in their lobby near the fireplace while Thierry took a walk along the rim-trail and snapped more pictures.

We took a final look at the “big ditch” and boarded the GCR to head back to Williams. On the return trip we were boarded by “bandits”, had to give up a few bucks, and were once again serenaded. We were treated to yet another buffet at the lodge in Williams, but they at least had a good chicken-rice soup. We boarded our train for LA at 10:45 p.m.

Neither of us got much sleep on the way to LA. We rose about 4:30 a.m. and made it to the dining car for breakfast. We arrived at LA and grabbed a cab to the hotel. The Biltmore was built in 1923 and sits in the heart of the business district. The interior is decorated with frescos, murals, marble fountains, bronze stairwells, and crystal chandeliers – quite an impressive building. We had a pleasant room and once again, I was craving a good breakfast – so after walking the neighborhood, I had my second most wonderful meal on the trip – the eggs and the bacon were perfect!

We went back to the room after breakfast and I promptly went to sleep. After a few hours Thierry decided to take a walk and visit the new concert hall designed by Frank Gehry. I wasn’t up to the walk so yet again, he went alone – but was really thrilled with what he saw and the design of the building. We had a nice dinner that evening then turned in early as we needed to be up and out by 7:00 a.m.

Our flight home was uneventful. Southwest was very efficient; we arrived in Philadelphia about 20 minutes late. Our friends Lisa and Kirk picked us up and I made it to bed by 10:00 pm. I was able to have my chemo on Friday and have remained fever-free.

All-in-all, I am glad we pushed on to the Canyon. This was not exactly the trip I had in mind, and worried about Thierry the whole time who was worried about me the whole time. It was a memorable trip in many ways.

Almost Made it as a Candidate for the Darwin Award

It was a blustery day on the Bay today (Friday). Thierry and I came aboard Curlew on Wednesday and took her out on Thursday, figuring this will be our last sail of the season. The temperature was still a balmy 70, and we had a good wind enabling us to sail down the Patapsco River and the Bay, We anchored in a quiet spot on the Rhode River just south of Annapolis and were able to enjoy a beautiful sunset.

We left the anchorage around noon this morning and headed east to the Wye River. Tomorrow we go on to St. Michaels where we will meet some friends who are driving down for the weekend.

Today the winds averaged 25 knots, with gusts over 30. The skies were an incredible blue, laced with puffy white clouds. The winds were from the NE, and the waves were pushing 4 ft and steep; high for the Bay. As we were crossing the Bay, we noticed a very large sailboat heading north. Thierry thought that she was a racer and wondered if there was a race going on. Before too long, the boat got closer – and closer. She looked to be about 60’ or so; black hulled with white stripes angled on either side of her bow. She flew huge Mylar, high-tech sails and had a crew of about 15, most of which were hanging over her port side as she made her way north.

We were on broad reach with the wind on our starboard quarter. The approaching boat was on a port tack – all this meaning we had the right of way. The racer was making incredible headway, and seemed to come up to our starboard side in a matter of minutes. Thierry seemed to think she was going to pass behind us – but from where I was sitting, this boat looked like she was going to hit us.

So, what did we do, I grabbed my cell phone to take pictures and Thierry went below to get the camera. Here we both are, cameras in hand watching this boat gain on Curlew – Thierry saying, well we have right of way and there really is nothing we can do! The racer was flying, literally- Thierry said she was planning, meaning her bow was out of the water, spray flying everywhere. We were so close I could see the expression on all of their faces – none of which looked panicked, annoyed (that we were in their way), or in any way interested in the two idiots standing on deck trying to take pictures.

Several thoughts ran through my head – the main one was: So when they recover our bodies, will someone comment on the fact that we were standing there taking pictures when we went down? Would they find the cameras which would show the point of impact? I really didn’t see how they could miss our stern. Oddly enough, I wasn’t afraid, but I sure felt like a bit of a dope. It made me think of those people who take pictures of natural disasters like tornados. Can you imagine standing there being pelted with 100 mph winds, hail and debris, taking videos of a tornado so you can get it shown on the local news? My next thought was – so I guess this is how one becomes qualified to win the Darwin award; too stupid to avert danger!

Obviously, since I am writing this, we came out of the incident unscathed. But if you could have seen how close this boat was and how fast they were moving – I don’t think they passed more than a few feet behind Curlew. You could hear the loud roar of their sails and feel the spray from their boat. It was amazing. As it goes, I never did get a decent picture because I had sunglasses on and couldn’t see to shoot. Thierry got a few as she approached and after she passed us. I have since learned where the video buttons are – so I’ll be ready next time!

It is now Sunday evening, and since I hadn’t posted yet, decided to finish out the weekend.

We spent Friday night in Dividing Creek off the Wye River. This is a very secluded and scenic anchorage. On Saturday morning we left for St. Michaels where we arrived about 11:30 a.m. We ate lunch aboard and headed into town around 1:00. Our timing was perfect, as our friends from Philly, Barbara and Barry, arrived around the same time, having driven down that morning. We met them later in the evening for dinner. Today they came aboard and we had a nice motor down the Miles River and a great sail back to St. Michaels. The winds were 25 knots gusting to 30 from the NW, so we plowed through on the northern leg of the trip. Fortunately the sun was blazing, so it kept the temperatures at a very comfortable 60+ degrees.

When we got back to the anchorage, we left for town and had a fun time at Ava’s Wine Bar where we had drinks and dinner and great conversation with a variety of bar partrons. Now, back on board, we are hoping that the winds die down enough tomorrow to make our 45-mile trip back to Baltimore bearable.

It has been an incredible  and very fun couple of days!

PS: I got a call this week from the pharmacy company who will be sending me my drugs. All I have to do is call each time I need a refill – and there is no co-pay! Now I just have to figure out how to overcome all the side effects But, as Christopher Hitchins just said in a recent interview on NPR: because the drugs are so toxic, they must be killing something – hopefully it is the cancer and not the rest of me.

A Brief Update

I am feeling a bit draggy as I write this, so reader beware.

I had my second treatment under my new treatment plan on the 21st and ran into a bit of a glitch.  My visit with my doctor went well.  I explained a few of the side effects I had after my first treatment which consisted of an itchy, facial rash and constipation (ugh!).  She seemed pleased that I was manifesting some symptoms as this was an indication to her that the drugs were working.

She told me a funny little story about a woman who was in a trial that my doctor was involved in some years ago for one of the drugs I am taking.  The woman had a very nasty, fast growing breast cancer that was not responding to the drugs of the day.  Fortunately, she responded well to this chemo; however, one day she came to the doctor's office in a wheel chair.  My doctor panicked, thinking this doesn't bode well for the study.  She asked the woman why she was in the wheel chair. The woman told her that the soles of her feet were sore, so rather than walk she decided to just get in a wheel chair.  The doctor was concerned that this side effect would prevent the woman from continuing in the trial.  When she told the woman how important it was that she notify her of the side effects, the woman stated that she didn't think this was a problem... especially since she was finally responding to a treatment, and she had no intention of stopping!

The drugs I am taking cause, among other things, painful feet (primarily in the balls of the feet).  Foot and hand syndrome as it is called, can cause the hands and feet to become red, swollen, painful and blistered.  Oh joy.  So far, the only thing I have noticed is an increase in the neuropathy in my feet. They have also become very sensitive to uneven shoe-soles and seams in socks, and it is very uncomfortable to walk barefoot.

After my meeting with the doctor, Thierry and I went to wait for my blood test results and treatment.  About 11:00 we were informed that my white count was low which could prevent my receiving treatment.  Another blood test was taken - this time from my arm rather than from my port.  The test results were vastly better and I subsequently was treated.  We finally left the infusion center at 4:30 pm - some 8.5 hours after we had arrived! 

Since my white count was low, my treatment plan has changed - at least for this week.  I also found out that one drug I am given - Zometa - which builds bone and has been shown to be very effective in treating bone metastases - can only be administered once a month.  I am now receiving treatment every three weeks, so I will have to arrange to have this infusion done on an off week.  Not a real problem, just didn't realize this until my infusion nurse informed me.

So, I am learning how to adapt to the new treatment.  I find that the day after I feel a bit nauseous.  This is something that really is not treatable with anti-nausea medication. Many of the anti-nausea medications which I took in the past made me dizzy and sleepy.  It is something I can deal with and when really necessary, take a few puffs of a joint (yes, a marijuana cigarette). This not only relieves nausea but helps my appetite and calms me. Often right after treatment I become restless and suffer what could be described as restless leg syndrome, only it affects me all over.  By Sunday afternoon I begin to crash and on Monday I don't feel like doing anything other than staying in bed - but I won't let myself succumb to that - totally.

I have also noticed that my esophagus is becoming sensitive - especially right after treatment. By that I mean I feel it when I drink something hot.  I am not sure which drug is causing this, so am not sure what to do about it. I take my pills with food, rather than after I eat, as it seems to help me digest them better.  My tastes are beginning to change - again, and my appetite has dwindled. 

Regarding the pills, I was told by the social worker that my insurer did say they would pay for the drug under the medical (chemo) portion of my plan. The problem is they have no mechanism in place to distribute a drug that does not go through a pharmacy plan.  In essence, there is no way to bill for the shipping and handling.  This is all great, except I still don't know when, how or where I will get my drugs.

I was hesitant to write this blog as I felt it would be a downer, but then, this is what some of my days are like.  Since my treatment on Thursday, I made two trips to the doctor with dad, we had company for dinner and actually had a good time with friends watching the Phillies lose, made dinner at mom'n dad's on Sunday, went to the gym, and went to a concert last night.  Today I had a client meeting which was the kick off of a new project and tonight we have our book club.

Hey, it's been a good week.

Bedside Manner

It’s late Sunday evening and I am under a lot of stress. The Phillies lost their first game in the playoffs and are playing terrible baseball tonight. Thank goodness the pitcher is doing a decent job, although he just gave up a run. I am not sure how long I can sit here and write, but will give it a whirl.

It seems when a subject comes your way twice in a few weeks, it is one you should write about. A friend brought my attention to an article in the local paper written by a spouse who accompanied his wife to a doctor’s appointment. If I recall correctly, she was diagnosed with cancer (I believe breast), and he was shocked by the doctor’s attitude. From what I remember, the doctor’s attitude suggested there was little hope for her. They subsequently went somewhere else, but the point was that the doctor showed little empathy for the patient.

When I was at the breast cancer conference last week, one of the speakers was a survivor who was there to talk from the patient’s perspective. She told the story of her visit to the doctor when she received the news of her diagnosis. The female doctor informed her of her triple negative breast cancer, then basically gave her a bleak prognosis and also showed little empathy. The patient proceeded to get other opinions, landing with my doctor who provided some “hope”.

I have had this experience myself, both in dealing with my own disease and that of my sister. When Jean was diagnosed about three years after my first bout of BC, we went to the pros at the Hospital at the University of Pennsylvania. Jean had a stage III cancer, based on the size of the breast tumor and the fact that it had spread to her lymph nodes. The docs at Penn basically wrote her off – and proceeded to talk about bone marrow transplants (the drastic treatment that was given at that time when the disease spread). Then she saw the man who would become her surgeon, Dr. Schwartz. He looked her square in the eye and said he could treat her and shared his experience with this type of disease and basically, gave her hope; not a promise of a cure, but hope.

When I spoke with an oncologist after my latest diagnosis, I looked at his face, and although he emoted much empathy, he also looked defeated, tired and worn. Even his voice sounded glum. I am sure after years of treating cancer, a person must become somewhat jaded and at times, feel defeated; however, this was not an attitude I either needed or wanted. When I met my current oncologist (the same as the guest speaker’s), she took my hand, looked me in the eye and said “I can help you”. She didn’t promise to cure me. In fact, she didn’t make any promises; she just projected confidence and gave me a feeling of hope.

The latest unpleasant doctor experience I had was with an ENT. Suffering from the effects of the chemo, my sinuses were a mess. The doctor I saw barely looked at me, spoke to his intern the entire time – even gave her my instructions, ordered an MRI and never followed up with me. You know that was the last time I ever saw him – and I will never see him again and will be sure to tell everyone how awful he was.

Are doctors so busy that they don’t have to care about treating patients as human beings and with a little dignity? Many doctors over-book and make patients wait for hours in the waiting room. Obviously they haven’t heard about customer service. But if most patients are like my parents, things like this don’t matter – my parents find a doctor and stick with them, no matter what! They are of the era before Google! When the doctor tells them something, it must be right. When a doctor tells me something I Google it; then I go back to the doctor and start questioning.

Now, I know some very good, very fine doctors – so this is really a generalization. However, I am sure many of you would agree – it feels like the norm.

The article mentioned a movie starting William Hurt (called “Doctor”). He is a doctor who is diagnosed with throat cancer. He gets to experience first hand what his patients have dealt with and it is this experience that changes his perspective. The author suggested that all doctors see this movie. I haven’t seen it, but my friend, a nurse, agreed with the author.

On a better note, the Phillies did win the ball game. Today was a wonderful day in the city. We managed to get the pictures of the karaoke party from Lauren and I figured out how to upload them to YouTube. So, for those of you who were there, check yourself out. For those who weren’t and want a chuckle, take a look by going to YouTube and doing a search on iwanaberma (until I figure out how to link them to this blog). Mind you, I did not detect any candidates for American Idol; but what a wonderful group of people they are!

Oh, I understand that the pill thing has been straightened out – more on that next week when I find out what is really going on.

It’s been a fine day!

Cleaning Day

The last few days have been absolutely beautiful ones in Philadelphia. So, what did we do? I went to a breast cancer seminar for Triple Negative Breast Cancer in African American Women from 8:30 – 1:30 yesterday (Saturday), and TD went to a simulcast at a local movie theater of a Metropolitan Opera performance of Das Rheingold in the afternoon from 1:00 – 4:00. This morning I went to the gym, then decided to clean the condo – and of course, we had dinner at mom’s tonight – prepared by Jean and it was wonderful!

We were supposed to go to the Annapolis Boat Show and spend a couple of nights on Curlew, but some things came up with Thierry and we decided to postpone until Monday, the last day of the show, and one of the more interesting. You get to watch the break-up of the show which is like watching a ballet on the water only the dancers are the boats, with lots of near misses – but often a crash or two – an event in itself, and a big party. Watch this video from last year’s show: http://www.youtube.com/watch?v=xfOl6lcrhL8&feature=player_embedded

Our housecleaner injured herself several weeks ago, and although she offered the services of her sister, I haven’t been motivated to call – until today. Actually I think it happened (her injury) at the end of August, how time flies! Thierry was away then, and on occasion I would be inspired to get off my duff and take a swiffer (dusting thing), and clean off the furniture. I even ran the vacuum a few times – especially before the book group met at the condo.

Mind you, my housecleaner doesn’t clean like I would, but she generally gets the basics done. This morning as I was vacuuming, I realized how much I really don’t like cleaning. I especially have a hard time with vacuum cleaners. Having had several in my lifetime, I have yet to find one that isn’t cumbersome and unwieldy. I have had up-rights and canisters, but no matter what size or shape of machine, I feel like they are out to get me. I mean, my legs get caught up in the cord, the hose gets twisted the wrong way, the canister either climbs up my leg or ends up crashing into furniture or turning upside down.

Thank goodness we don’t have a “lot” of stuff around (knickknacks) because moving things drives me nuts. As it is I have to skirt the edges of the bookshelves in both the library and office, thinking the whole time that there is an awful lot of dust that’s hiding in and among the stacks.

For weeks I had wondered why the condo smelled so chemically toxic every time the cleaner was here. I realized why when I opened a bottle of lemon scented Mr. Clean. Ugh! I thought I was going to lose it – the smell was incredibly offensive. I dumped the bottle down the drain and swore that’s the last time I buy that stuff. From now on I am going green and unscented if that is possible! Swiffer floor cleaner is next to go out of my cleaning materials inventory. These smells are bad enough under normal circumstances but when you are on chemo, the intensity is magnified by about 100.

Although I didn’t scour the shower, I did manage to clean a lot of things that my housecleaner consistently misses – so I feel like things are in good shape. I will give her sister a call tomorrow, and make sure at least once a month, I go through and catch all of those misses.

There have been two times in my life when we hired a cleaner who lasted only a few months. I was never happy with their work. I used to pay Lauren to help with cleaning when she was a teenager, and she did an amazing job when she got down to it. She even started cleaning for her aunt, and did some house cleaning when she went away to college. Does anyone really think their house cleaner does a good job? The answer is, they do if they get the basics done and lighten your load at any step.

The seminar I went to was good. I walked away with two bits of info. One has to do with overall survival rates of folks with my type of cancer, which isn’t as horrible as I thought. The other was about a new drug in the pipeline I need to explore. My sister Jean came with me which really made the whole thing easier for me – she was great company.  She even got up at 6:30 a.m. on her day off to come into town!

My birthday was on Wednesday and we had great fun at a Karaoke Bar in China Town. Everyone sang, danced, laughed and seemed to have a really good time. Definitely something we should do more often. It actually is a boost to go dancing and just letting loose – something I never did/do enough of!

They still haven't been able to straighten out my chemo-pills.  Fortunately I was able to get a stash so I am okay for a while. Amazing, one hand of the insurer does not know what the other is doing.

It has been a wonderful week, the house is sparkling and the Phillies are winning in what could be the last game of this series – making them division champions! Go Phills!

Between the Two of Us

When someone tells you something in confidence, who do you tell? Do you keep it a secret from everyone, or do you have a list of your own confidants that you share the secrets of others with?


This is a conversation that Thierry and I have had on more than one occasion. I will admit that there are things I am told that I won’t tell anyone. Especially if the person says, “this is strictly between you and me”. Then there are things I might share with those who I consider a disinterested third party. I’ll share the story and most likely won’t name names. Then there are one or two people (namely Thierry and Lauren) I may share someone else’s secret with, especially if I think they won’t really care about the subject matter – or if it is something I want to work through. I know if I tell Thierry, the story will go no further – as a matter of fact, he most likely forgot about it three minutes after I shared the tale.

But then who will Lauren share the secret with? Will she keep it to herself or share it with her husband? Where will it go from there? I know there are things I absolutely cannot share with my sisters. And please sisters, do not take this as a slight. There have been times when things have been said that should have not been shared – period. I am sure we are all guilty – me as well! It just is how it is among family I guess.

Thierry’s tongue-in-cheek theory is that if you tell a woman something in confidence it is like a women saying no when she means yes (this statement could incite a riot!). Meaning that by saying the subject is confidential you are giving the go ahead to spread it around!

I do try not to talk about people’s personal lives with others. I am guilty of talking to one of my physical therapists about people in my life who cause me angst or who I believe I may have caused angst - and named names. Of course, I justify this by saying it helps me work through the issues that caused the angst in the first place – the listener just doesn’t happen to be an actual psycho-therapist.

I like to think when someone tells me “this is strictly between the two of us”, that it stays there – between the two of us. Conversely, I like to think when I tell someone something in confidence, it stays there as well. Perhaps Thierry would say if you don’t want someone to find out about something, just keep it to yourself.

I began my new treatment on Thursday. I receive an infusion of Avastin and Ixabepilone (Ixempra) which takes a total of 4 hours to administer. In addition I receive pre-meds and Zometa. It was a long day! The Xeloda issue (those are pills) still has to be resolved. The manufacturer told the social worker that it is covered under my medical plan. At first they (the hospital) tried to submit a prescription to the regular drug store who told us that they could not bill the insurer and it would cost me $5,000 for a 30-day supply. The social worker then tried the next level of pharmacy – who informed me yesterday that they cannot work with my insurer. It is now being reviewed by yet another pharmacy. Fortunately I was able to get my hands on a supply which should last until this issue is resolved. (Next stop Canada???)

It was also fortunate that I read the brochure and info sheets on the drugs. I learned that I am not supposed to drink grapefruit juice (which I have been doing lately), nor am I supposed to take folic acid supplements such as what is included in my multi-B vitamins. Keep this in mind the next time your doctor prescribes new medication for you!

The picture at the top of the page is of our rock-on-rock sculpture. We collected these rocks at the Roque Island Archipelago this summer in Maine. We thought they would make a fine addition to our balcony – and they have.

It has been a beautiful few days now that the storms have passed, and a great week – this is news you can share.

How Are You..... Really?

Several times over as many months I have spoken with acquaintances that I don’t talk to very often. All asked the same question, how are you? All know that I am dealing with cancer, again.

So, I give my usual response, I am really doing well, which is also an honest response. Then they will ask, how are you feeling. Again, I iterate that I am really feeling pretty good. Sometimes tired, but overall, I am doing well. The conversation may go on to other things, but then the person says, well it all sounds good, but I’d like to know how you are, really!

The last time I was asked this question I lost it. My response was something like: What would you like me to say? I am really doing fine; trying to live each day and enjoy the life I have left. I don’t believe in dwelling on the negative and becoming morose over my fate. I choose to live…. Mind you, I said all this with much frustration and anger in my voice.

Why do people who I see and speak to so rarely think that they can illicit some deep, emotional response from me about my situation? Is it arrogance or just plain ignorance that causes one to believe that people are so ready to share their deepest feelings and fears with mere acquaintances? I have enough trouble thinking about these things myself, don’t like to talk about them – period – why would I want to open up to someone who shares so little of my life?

You may be thinking that I am overreacting here, but think about it! I mean there are a lot of questions one can ask a cancer victim. How are you is fine – so is:

• How are you handling the chemo?
• How frequently do you receive treatments?
• Are you able to continue working, go out, travel?
• DO YOU MIND TALKING ABOUT YOUR CANCER AND/OR TREATMENTS? 

I guess it is our job to educate those folks who really are concerned but don’t quite know what to say. When Doug passed, the pastor of our church where the services were held made an interesting observation. He told me that guests would be unsure and somewhat awkward, not knowing what to say to me and Lauren, and that we would be spending our efforts trying to put them at ease. That was, in fact, the case. I guess talking to a cancer patient is a similar conversation. People aren’t sure what to say and feel awkward. It is fortunate that most people can read signals, and when someone changes the subject, realizes it is time to shift the conversation.

So, you all may be wondering how I am, really. I did speak to my oncologist Thursday who gave me the results of the scans. The pain in my hip is osteoarthritis. The bone mets have remained stable (actually appear healed). There is some additional activity in my liver, though, so she is changing my treatment plan. I did not receive chemo on Thursday, and am waiting for the new treatment to be approved. One of the drugs is in pill form. I do not have prescription coverage and the pills cost $25.00 each and I would have to take four a day for about two/three weeks a month. The social worker is applying to the pharmaceutical company to see if they will provide the drugs to me directly at a reduced cost. Hopefully all of this will be resolved this week so treatments can resume quickly.

I am trying to stay positive, I feel slightly physically ill over the news and I really don’t want to talk about it with anybody! I guess that is how I deal with things; suck it up and cope. If I talk about it I will probably cry – and I don’t want to do that either. Maybe a doctor would say this is not healthy. I find if I make an effort to get past the fear and self-pity, I can actually manage to accomplish something constructive or do something I can enjoy – even if it is just watching a goofy movie on TV, and eek out another good day.

The Other Side of the Story

In my last blog I wrote about dating after the loss of a spouse. Well, there is another side to that story; that of the dying spouse and how s/he feels about the whole thing.

In his last days, Doug never spoke about dying, nor did he speak about his life to that point, or our lives together, or what might occur after his death – with the exception of his burial. I could start talking about my life before and with Thierry now – to anyone (including Thierry) who would like to listen. The ups, downs, things I should have done better, could have done, etc. But then, what is the point? Is this a woman thing; the need to talk about your relationship on your deathbed?

As I sit here on my sofa in the living room I look around and see all of the things Thierry and I put together to create our home. When we made the decision to buy our condo, we also decided to rid ourselves of all our furniture and start fresh. Everything in here, with the exception of a few pieces of furniture and kitchenware (and bookshelves) is new, and we selected them together. We’ve roamed the streets of Rockland, Beufort and Philadelphia collecting artwork. We picked out our dishes and flatware, and carefully add pieces to our collections as we go along.

My sincere wish is that Thierry not spend the rest of his life alone. He is a wonderful companion, self-sufficient, interesting and smart. He is respectful and not the least bit condescending. He is neat, clean and never leaves toothpaste in the sink. (He can use this in his ad someday when posting on a dating site!)

Even though I know that he may likely find another mate, emotionally I have difficulty with the idea that someone will come into the home we’ve created and either settle in or start anew. Actually, I am okay if they start over – new condo, new everything (well, almost everything). Oh, alright, they can keep the condo – new everything else. I am sure whoever comes in here would want to do that anyway.

Fact is I won’t be worrying about any of this at that point. And the things I am talking about are just that – things. If it all went up in smoke tomorrow, there really isn’t too much I will cry over. So, instead of thinking about Thierry after Mary, I’ll concentrate on Thierry with Mary, and try to make our time together fun and memorable!

Yesterday we celebrated Mom and Dad’s 90th birthday. We had a catered affair at Lauren and Mike’s house. About 40 people came including Dad’s brother (and only surviving sibling) and his wife, cousins and their friends and neighbors. They both looked really well and happy. We are so fortunate to still have our parents with us.

Thierry is finally home – I picked him up on Thursday. The weather has been wonderful. It’s been a good week.



What is the Appropriate Amount of Time?

Last week I met a man whose wife had passed two months ago after a long illness. He is a fairly young guy – about my age - with grown children who live outside the area. He raised the question of when is it appropriate to begin dating after your spouse has died.

What a great question. I tried to do some online research to see if there were any professional takes on the subject. I couldn’t find anything, but did come across one writing that stated that men tend to remarry more often, and more quickly than women. I do know of several instances where a man who recently lost his wife remarried within one year of her passing. I know a few women who have lost their spouse. They had good, strong, happy marriages and mourned their deaths for years and are still single.

This is not to say that women are more devoted to their spouses or their spouses memory, it is just what I have experienced. The article I mentioned above did say that women are starting to remarry after the death of a spouse at a higher rate.

Doug passed after a relatively brief illness. It was the most stressful three months of my life. All I could think about after his passing was selling our house and starting a new life; one that did not necessarily involve a man. My business was picking up; I had new friends and a great new house. I also was very apprehensive about dating again, mainly because I felt old and out of shape.  After 19 years of marriage, the thought of taking my clothes off in front of a man scared the heck out of me.

My relationship with Thierry started some 20 years ago as workmates. Doug and I sailed with him over the years and he new my family. We started to see each other as friends about 4-5 months after Doug’s passing, and our relationship stayed that way for about 6 more months. While I was seeing Thierry (as a friend), I was conscious of the timing. I was concerned, somewhat, about what people would think.

Often people say “you should wait a year.” Where that came from I don’t know. I think every situation is different. When someone is suffering from a long illness, the spousal relationship goes through many changes, feelings and emotions, including a mourning period while the person is still alive. There are also those situations where the marriage may not have been the happiest. A death frees the survivor, who for whatever reason stuck with the relationship.

Then again, a person who has been married for say 30, 40 years, and had a relationship that was heavily dependent on their spouse is most likely the person to remarry quickly in order to recreate the environment they had and relieve their fear of being alone.  This, they say, is why men tend to remarry so quickly.

There may also be children to consider. However, I don’t believe that the decision to date or remarry should be heavily dependent on what the kids have to say. Yes, they are going through a lot of emotions and may be suffering a devastating sense of loss, but they have their own lives and their interference in their parent’s relationship is as warranted as a parent’s interference in their own. Often children are concerned about their inheritance, and rightly so. It is up to the surviving parent to be thoughtful of dispensing of heirlooms and if possible, taking care of financial arrangements.

Each situation is very different – and personal. We can’t judge someone else’s choices. I have two answers to the question, when is it appropriate to begin dating after the loss of a spouse. This first is, go with your gut – meaning what your conscience is telling you is the right thing to do. The second is, when in doubt, do nothing. Eventually the answer will come to you.

Thierry is finally on his way home. His two crew members arrived in Newport, RI this morning, and they shipped out mid-afternoon to take advantage of northerly winds. He sent me a lovely picture of a fish that they caught being filleted. It is time for him to be home!

I had my treatment yesterday and had lots of company. We played scrabble and the time flew by. I can’t tell you how special it makes me feel when my friends and family share their time with me on chemo days.

I feel pretty darn good today – tomorrow I have my scans. I feel positive, and will deal with whatever news I get. I am off chemo this week, and next weekend we have my parents’ 90 birthday party. It has been a great week, and I anticipate another good one coming up!

Now What Was I Looking For?

I took my dad to the auto body shop the other day. They have finally decided to sell their car which needs a repair before the transaction is finished. Dad handled the entire transaction/discussion and before we left, the shop-owner asked for his phone number. Dad rattled off the first 8 numbers without a problem, the last two were lost somewhere in the nether-land.

I stood there waiting for him to remember for what seemed like ten minutes, and then finally gave him the info. Dad doesn’t seem to suffer from memory loss, unlike my mother. Before I went away I had told my folks that we would go out to lunch. I told mom the night before and called again just before I left the house to pick them up. On the way to their home, I got a call from my sister telling me that mom was in the middle of making tuna sandwiches. Dad can rattle on telling stories from his childhood and working years. He also seems to be pretty aware of immediate things like doctor’s appointments and what day it is.

Two days after our trip to the auto body shop I was getting ready to go out and was packing a bag. I walked into the kitchen, wandered around for a minute with no idea what I was doing there. I left the house realizing after I got out to the street that I forgot to grab the cash that was sitting on the table.

I don’t believe any of our family members suffer from dementia or Alzheimer’s. We are fortunate that way. But isn’t that what we first think about when we can’t remember the right words to explain ourselves or someone’s name? I’ve been thinking about this for years, memory loss. It seems like it has been ages since I started to forget names of actors and the words I needed to finish a sentence. I originally blamed it on menopause, now I blame it on chemo-brain (a legitimate side-effect of chemo causing memory lapses, problems with concentration, etc.).

The reality is our memory actually starts to fade in our 20’s and progresses in our late 30’s and early 40’s according to an article by Cathryn Jakobson Ramin published in the New York Sunday Times Magazine (12/3/2004). Things like alcohol, diseases, head injury, stress, and lack of sleep can add to memory loss. According to the article, “middle-aged forgetting follows a pattern: people's names go first, because they are word symbols with no cues attached. Then there are difficulties with word retrieval. Instead of the phrase you want, you get what James Reason, a psychologist at the University of Manchester, in Britain, called ''the ugly sisters'' -- similar-sounding but frustratingly incorrect combinations of syllables.” I can really relate to this!

It appears that as we get older, prospective memory and working memory become more difficult. Prospective memory is remembering to perform some action in the distant future, like picking up something on the way home. Working memory gives us the ability to “manage several ideas or intentions at the same time.” No more multi-tasking!

There is a theory that when we get into our 60’s or so, forgetfulness troubles us less – I guess we learn to adapt or our lives become less complicated. But I know my mother (and us kids) is very troubled by her memory loss. Fortunately, they are working on a lot of drugs to help combat the problem, and many have proven quite effective – although they also have side effects. All in all, I am relieved to find that what I suffer from is so common. Hopefully by working on the puzzles in the newspaper and physical exercise will help lessen the severity of memory loss. At least I know I am not alone.

Since I got back from Maine, I have had energy and have actually been productive. I guess I am getting used to Thierry being gone. He actually is on his way home having survived the non-event hurricane. Friends will join him this Friday for the overnight portion of his trip south. It has been a good week, and my weeks will be even better when Thierry gets home!