Yes, I’m back. I’m sorry it’s been so long since I’ve posted anything on my blog.

The last months of 2014 were hard for me. We lost another dear friend of ours, Patrick, who died far too young of cancer. He and his family have been very close friends of Nancy and myself since we were teenagers and feel like our extended family. When I was sick, they were there for us. His illness surfaced when it was too late for treatment. He passed away end of November. I wish I could say or do something to be supportive of his family. It makes me feel sad and angry at myself at the same time for not being there.

Just before Christmas, my father in law passed away. He was 90 years old and had a long and fulfilling life.

I’ve been working full-time since January and my work is satisfying. It means having to do less work for the societies that I’m involved in. I have had to reconsider how much time I spent on these activities.

I had scans in January which showed good results. The medication is still working and the cancer is still in remission. I couldn’t wish for better news at this time.

Right now, Victor and I are visiting my father in Malaysia. Thanks to my mom who is looking after our dog Jaap. Without her watching him, I don’t think we would have gone on this trip. My dad is doing well and working hard as a professor at UTP, where he leads the Geophysical Research Center. Wednesday we head back to Holland. I’ve been able to do some writing here, and have been reading a lot. Just finished Stoner by John Williams, Perfect by Rachel Joyce, and am now reading On Liberty by John Stuart Mill. This last one is a favorite of mine, and I highly recommend it to all who are wondering what is happening to the world we live in.


The e-mail I sent (below) was in response to a call by Shirley Mertz from the Metastatic Breast Cancer Network, asking for volunteers who would like to share their story about living with metastatic cancer. I had sent my reply to my blog via e-mail, but the original message did not come through.

This past week I had another check-up at the hospital and this time Nancy joined me. Fortunately, everything is stable and my blood values were in line with last time. The drugs are working well for me. I found out I have the Luminal B subtype, which is ER positive and 50% PR positive (Her2 negative). I still have to finish my report of the conference. Tomorrow Victor is celebrating his birthday and his degree in tax law so it will have to wait for another day. Shirley sent me a very nice e-mail in reply.

I’ve enjoyed watching the World Cup games these last two weeks. I hope I’m back in time to watch the Dutch team on Monday against Chile, who seem quite good this year.

Till next time friends!

dear Shirley,
theank you so much for your e-mail asking for people who wish to share their story. I would very much like to share my story with others.

First of all, I am living in Europe, in The Netherlands to be exact. I went to college in the US and lived in the US for 11 years, although I’m a Dutch citizen.

I don’t know if you would want a story from Europe, but I follow MBCN and would like to have a chapter or network like MBCN here in Europe.

My story is one of hope and my recovery feels like a miracle to me.
I was diagnosed with stage 4 cancer in July of 2012, at the first diagnosis, when I was 42. There was no history of breast cancer in my family. Also, I didn’t feel anything in my breast because I was checking for lumps, whereas this tumor felt like my breast bone (upper part of right breast.)

The metastases were spread all throughout my liver, so that it was one and a half times as big, like a deflated soccer ball. My liver was in such bad shape that hormone treatment wasn’t an option because it takes 6 to 8 weeks to start working and my liver was barely working (bilirubin at 50). After the first 10 weeks of weekly chemo’s (AC) didn’t work well enough, I got very sick from infections due to neutropenia. I could not eat or talk becausebof the mucositis and stomasitis. Meanwhile, my oncologist thought the cancer was growing and didn’t have much hope. I did not think I would live till Christmas of 2012.

Fortunately, I was transferred in October to the National Cancer hospital where I was given Mitomycin-C locally in the liver. Two treatments and two months later the results were so good that much of the cancer in the liver was replaced by scar tissue. The liver stabilized and I could eat and talk again. From january 2013 I took Xeloda which reduced the cancer in the breast and since May 2013 I’ve been on hormone therapy (Letrozol). I’ve been in menopauze due to the cancer, not the chemo. I’ve gone back to work – I work as a IT architect contractibg for the government – and have been getting back in shape by execising and eating healthy. Most of the time I feel great. I look good again and can function almost as before. My message to others is that there is life after hearing you have metastatic cancer, and with the right treatment and frame of mind and support more is possible than you would expect. I’m not cured – the cancer is there there but inactive – so as lomg as the hormone therapy works I’m fine.

I also am part of a social network of other women with mets here, because there are very few resources for people like us. What bothers me especially is that patients with mets often don’t seem to count. The images and fundraising campaigns in the media suggest that either you can be cured (stages 1-3) or else you face imminent death (stage 4) and this frightens people. Research results and treatments for metastasized breast cancer are not easy to find here and there’s a big gap in knowledge between oncologists and hospitals. The many regulations slow down research projects and make the drugs exorbitantly expensive. Still, I am extremely gratefull for this second chance I’ve been giving at ut has nade me value my husband, family, nature, friends and my life so much more, I’ve taken up windsurfing and writing and work less.

That’s my story. I’ve bee writing about my experiences at in case you’re interested. This is a public site so feel free to use anything that you find interesting, with a citation/ reference. I hope you don’t mind but I am publishing this letter on my blog so others can follow. If you do mind, let me know and I will remove it.

Please let me know if I can help in any way.

Kind regards,
Sheila Ghosh
The Netherands
+ 31 (0)6 54 913 912

Energy and persistance conquor all things

Kom naar het kinderconcert on March 9th (Come to the children’s concert)

Zonta organiseert op zondag 9 maart een prachtig kinderconcert in Singer Laren. Dit wordt echt een hele leuke dag!  Het concert is voor kinderen vanaf 4 jaar en duurt iets langer dan een uur. Het Artonis Piano Trio speelt prachtige ontroerende muziek en het Circus Amersfoort – dat vooral bestaat uit jongeren tussen de 16 en 18 jaar – zal ons vermaken met hun acrobatische toeren. Het concert is voor jong en oud en kan goed gecombineerd worden met een bezoek aan het Singer museum, waar nu de tentoonstelling van Mauve tot Mondriaan loopt.

kindercircus amersfoort
kindercircus amersfoort

140102 circusconcert def

Alle vrienden die een kaartje kopen zijn van 12-14 welkom bij mij thuis voor een lunch/high tea. Ik zorg voor lekkere hapjes en drankjes. Als je kinderen onder de 4 hebt, laat het even weten en dan zorg ik voor oppas. We hebben een speeltuin naast ons huis en er is een hele mooie speeltuin in Laren (Ons genoegen) waar we ook naar toe kunnen.

Tickets kan je bestellen via mij per mail sheila.ghosh at (Dit om spam te voorkomen!).

Ons goede doel dit jaar is Femmes for Freedom die vrouwen helpt die gevangen zittten in een huwelijk. Je zou het in Nederland of Europa niet verwachten maar veel vrouwen die religieus getrouwd zijn kunnen niet scheiden zonder een geldsom aan de man te geven, zelfs als hij hen verlaat. En vaak wil de man dan nog niet scheiden. Mannen mogen meerdere vrouwen trouwen volgens deze godsdienst dus die hebben er geen last van. Deze dappere vrouw wil deze ongelijkheid en onrechtvaardigheid ter discussie stellen en heeft daarvoor de hulp van anderen nodig om de cultuur en wetten te veranderen. Dit goede doel wordt dit jaar door alle Zonta clubs van Nederland gesteund. 

Ik hoop dat jullie massaal gehoor geven aan mijn oproep want het wordt een hele leuke dag! En ik vind het erg leuk om jullie dan weer te zien. Willen jullie dit doorsturen aan vrienden en collega’s, verenigingen of scholen?

Hopelijk tot ziens op 9 maart!!

For my international friends:

On Sunday March 9th, my Zonta club will be giving a Children’s concert at our local museum Singer Laren. The concert will be held in the Theatre which seats 400 people, so we have lots of tickets to sell. But since most of you live very far away, I can’t imagine that you could come here just for that!

The charity we are supporting is Femmes for Freedom. The founder is a Dutch woman of Pakistani descent who experienced imprisonment within her marriage. She was not allowed to have friends or even see her parents. When her husband left her, she could not get a (religious) divorce. Many women have find themselves in this predicament. The culture and religious laws will need to change, but the things she has been able to accomplish already are very impressive. So spread the word, and if you know of anyone in this situation, you can point them to the Femmes for Freedom website.

Take care,

Looking back

Dear friends,

On november 1st, our much loved dog Flo passed away. It was really hard on me, and also on Victor, my sister, mom and kids who loved her dearly.

Muddy Flo
Muddy Flo

We will miss her so much!

A week later my sister showed me an article in the New York times about the untimely passing of my mentor: Stanford professor Cliff Nass. I had just had the good fortune to see him in September in Paris. We had talked in the bus  on the way back from the special Seine cruise. It was so good to see him again after 20 years (I graduated from Stanford in 1993). He was a test driver for the automated Google car and could talk very passionately about his students and his research on multitasking, the human brain, communication and driving automatic cars.

A week later I heard one of my colleagues at Unisys had passed away as well. Hans was a very jovial and kind person, always ready to help. He was an avid actor and Shakespearian, which really impressed me. I had worked with him a few times, we’d had a chance to talk during those days and he will be much missed by his family and colleagues.

In November I connected with dr. van Weert (whom I had met at the patient conference on Oct 12th). She is an Associate Professor in the Department of Communication at the University of Amsterdam and is willing to help me with starting a Ph.D. She invited me to a research meeting about patient-doctor communication at the AMC hospital, hosted by the research group in Medical Psychology. It was a very interesting meeting, and afterwards I briefly met some other Ph.D. students. I plan to start my research in January and I want to focus on communication about metastatic cancer. I plan to start analyzing  the media effects of charity campaigns (think of Pink Ribbon type campaigns) on self-efficacy and fears of metastatic breast cancer patients (in online discussion forums).

End of November, I went to our local farmers market in Eemnes with a good friend and I bumped into friends from Huizen. The farmers market is organized by Ria who used to be our next door neighbor but now lives on the Meentweg in Eemnes (see the Blommenhoeve for more information).

In early December I was able to complete my work and deliver the new Architecture for Digikoppeling. I’ve been asked to continue on the project and was asked for another project as well. We had a really fun dinner and game with the whole team and I really enjoyed it!

On December 4th, I had another checkup at the hospital. My friend G joined me and waited patiently as I went to get my blood test done and waited for the doctor. Fortunately all was well. The liver showed slightly higher levels but that could be due to the medication (Letrozol) that I’m on. My next appointment is in the middle of January.

On December 7th, I left Holland and arrived in Kuala Lumpur on the 8th. I met Nancy at the airport and together we took the KLIA Express into KL. The next day we went to Ipoh and my dad picked us up at the train station. It’s been really good to see him. He lives in a nice house in Ipoh, near hot springs and a water park. It’s the rainy season here so it rains hard for a few hours each day. This weekend we’ll visit Penang, and we hope to meet up with our friend Bommy.

Next time I’ll upload some pictures. Take care!

Good results!

Dear friends,

Last wednesday, October 2nd, I had an appointment with my oncologist, Dr. Baars. She had good results for me. The MRI showed a reduction in the tumor from 1.1 cm to 0.8 cm. No new lesions or washout (whatever that means) have appeared. The previous scans had shown that the lymph nodes appeared normal again. The CT scans, as always, are difficult to read since cancer cells cannot be distinguished from scar tissue. And since the Mytomycine-C treatment of the liver, the liver is mostly scarred. But the areas in which they could discern tumors, the scans showed a reduction in these tumors as well. So the cancer is clearly in regression/remission.

Even my oncologist seemed relieved. My next appointment is on December 4th. I mentioned that my left arm has been painful the past few months. Usually the pain occurs at night. Sometimes I wake up in the middle of the night with pain in my left arm and hand. In the morning, the stiffness usually disappears. Dr. Baars referred me to the hospital neurologist (18th of October) and a nurse took pictures of my neck and arm. So we’ll have to see.

Last night, Marc Dufour stopped by. I was home late because I volunteered at the Undergraduate College Fair, organised by John Terwilliger on behalf of the Ivy Circle. The fair took place at the International School of Amsterdam. Quite a lot of kids stopped by our Penn table , and Flor  – who graduated from the University of Pennsylvania in 2010 – and I enthousiastically explained the admissions process, how great Penn is, and how good the faculty is. A lot of young students were really impressive and wanted to study in the US. There were quite a few Dutch students as well. I heard it is very difficult to get in Penn these days, standards are even higher than when I attended.

Marc is visiting his family and friends for about two weeks. It was good to see him, it has been a few years since we had seen him and of course, that was before he (and I) found out we have cancer. Marc has been following a special treatment, which has kept him alive for longer than he had anticipated. This past May, however, scans revealed new tumors in his lungs, which are now the size of orange/grapefruits. He underwent radiation therapy and feels much better. We had a great time but had to break off our conversation because Victor wanted to watch Three Days of the Condor – a great movie btw with Robert Redford. Ofcourse Marc and I knew every scene already and inevitably, Victor dozed off.

This morning I went for a run (it was really warm!). And today we went to the framer to get the enlargements of our wedding pictures framed. It’s quite expensive but it’ll be nice to have them hanging in our house. Tonight is Ada’s party but I’m a bit tired. And tomorrow I have Aerial Yoga which is great fun! I’m not at all limber but it’s like playing around (we do yoga postures  in draped fabric which hangs from the ceiling).

Have a great Saturday evening and Sunday!

Back Home

Dear friends,
Sorry its’s taken me so long to write. I’ve had jet lag this week, in a major way. Can’t sleep at night and then fall asleep sometime between 6 and 7 am only to wake up at 11 or later.

Nancy worked on the Oscars on Saturday and Sunday. She was at the very front of the red carpet, guiding the stars to their red carpet interviews. On Sunday Nancy’s friends Chris and Antar took me to the farmers market. We first had coffee (tea for me) at the Coffee Bean near Vine. Lauren (a.k.a. power Lauren – she’s an electrician on shows), Meg and her husband George and their dog Kitty from Las Vegas were already there. I had not met them before but they were all great fun! A little while later Graham showed up, he’s a dancer with Lady Gaga and we all headed into the bustling farmers market. The fruits and vegetables are huge, there was one radish that was at least 40 cm. Too bad I couldn’t buy anything!
It was a nice sunny morning so we went to the Melrose farmers market afterwards. My mom would have loved it. By this time my feet started to hurt so Chris dropped me off at Nancy house. Nancy was just getting changed for the Oscar’s. While she worked I did some laundry. She was off around 6 and a little later we went to Chris’s place to watch the Oscars on his huge tv.

Nancy and I flew back Monday morning and arrived home on Tuesday, February 26th. Victor met us at Schiphol, took my bags home and then waited for Annet and Henriette to arrive. We were picked up by our mom because I decided to wait in Amsterdam since I had to go to the hospital later that day.

Tried to sleep but couldn’t, so we left Nancy’s place around 2 pm. I had an MRI at 3 and a CT scan at 4.
Not much to say about the days after – Wednesday I slept, Thursday I slept and walked in the forest with my mom and Flo. I felt like I was sleepwalking most of this week, so jet lagged! Then Friday Victor took me to the hospital for a meeting with Dr. Baars. She was in a good mood as usual and showed us the blood results. They were down again, which is a good sign. The MRI scan showed that the tumor in the breast had shrunk from 2,4 cm to 1,5 cm which is good news. Dr. Baars advised another three rounds of Xeloda (Capecitabine) since it works well for me and the side effects are tolerable. The CT scans showed a very rough edged liver, still too large. It is very hard to make out if there is cancerous tissue left, due to the scar tissue. But according to the blood values, the liver is stabilized. One value was still high but that could be due to the treatment.

Have to walk Flo now, she’s asking to go outside. Till later!

Stopover in Santa Barbara

We left Monterey on Sunday as the weather turned, cloudy and dark. Unfortunately we got a parking ticket because we were late refilling the parking meter. Driving past Carmel we stopped at Point Lobos State Reserve. Although the skies were cloudy, the state reserve was quite busy and once we saw the view we realized why it was popular.

The state reserve stretches along a rocky coast, with beautiful ocean views. The path winds along the sandstone rocks, rising here and there and offering views over the caves, hidden beaches and wildlife.
Point Lobos 1
We saw cormorants (a black slender bird the size of reigers), pelicans flew by us, soaring right next to the cliffs we were standing on and in the water we could see seals hanging like surfers.
Point Lobos 1
It was somewhat cold so after we walked along the ocean for a hour or so we returned to the car and hit the road. Nancy drove us back to Carmel where we stopped at the CVS and Starbucks. There was a homeless man (maybe an old veteran) sitting at a bench outside CVS. I saw another man give him dogfood for his very cute terrier. On the way out I gave him a vitamin water and chocolate chip cookies and complimented him on his pets – he also had a green parrot on his shoulder – and he was very grateful. We then drove via Salinas to the 101 South where we passed a Rabobank, of all places, Salinas seemed very odd to me being Steinbeck country. And as Boom Chicago says “who would take their money to a ‘Rob-a-bank’” – there really seems no other way to pronounce Rabobank in English. We saw three huge Rabobank offices just on the drive to Santa Barbara.

It was a four hour drive to Santa Barbara but thanks to my wonderful sense of misdirection (sending Nancy north when we should have gone south on State Street and ending up in Goleta instead of Santa Barbara, and then taking the downtown exit when we should have waited), we saw all of Santa Barbara by night, which is not very much but my mishaps took us nearly an hour longer. All I can say for myself is that Google Maps spoiled me, and since I have no data outside of the free wifi at the Coffee Bean and Tea Leaf and Apple Store I’m basically a lost case when it comes to navigating. Of course, once we got to Cabrillo Street – which sounds a lot like Carillo which we thought we needed – we expected to see the Santa Barbara Inn. Well, Santa Barbara is quite dark at night and it was hard to find. Turns out we were about 100 meters away when Nancy called the front desk and the receptionist had us turn around. 5 minutes later Nancy turned back and we finally arrived, exhausted and cranky (me, that is, Nancy is a weather-beaten traveler who is not easily phased).

We checked out the bistro at the Hilton next door but it was too fancy for my taste and so we took the car and headed downtown. Downtown Santa Barbara was pretty dead on Monday night, which happened to be President’s Day. Some bars and restaurants were open but all were pretty quiet. On the street we passed a homeless woman in a wheelchair who asked for help. Of course, I said, as I gave her three dollars.

We then had soft tacos at the Chipotles and Nancy fetched bottled water from the car. I really feel bad eating out when there are people just outside who don’t have food or a home to go to. Then the lady wheeled inside the Chipotles to use the bathroom – and they were very kind to her, helping her out and straightening her clothes for her.

Since we don’t eat much, we had one veggie taco and one bottle of water left over which I gave her outside. It was much appreciated. Still, I felt a bit down the next day and didn’t enjoy Santa Barbara as much as I had expected. Even though the sun shone it was cold as the wind picked up a bit.
Santa Barbara1

Santa Barbara 2
The shops were very nice though, and we stopped at an olive oil shop where the shopkeeper Robert – once he heard we were from Holland – told us he loves Kinder surprise eggs (the chocolate eggs made of milk and white chocolate with the little gifts inside). So I made a promise to send him some. He has a webshop ( so anyone who loves olive oil can order some here. We passed a wonderful teashop with beautiful japanese teapots and teacups. I wouldn’t mind buying some, but the prospect of trying to stuff them in my suitcase stopped me. So I bought some loose leaf herbal tea called Tranquil Dreams and filter bags.

We stopped by the beach and took some pictures of the seagulls and waves and then headed south down the 101.
meeuwen Santa Barbara

My friends in San Francisco

As many of you know, the reason for this trip was to visit my dear friends Erin, Laurie and Laura in San Francisco. My journey with cancer has really opened my eyes to the fact that my family and friends (all of you!) mean more to me than anything in the world. So reconnecting with my friends was the driving force behind this trip. Thanks to Nancy who made this all possible: she took care of my ticket, has driven me everywhere and has been a great trooper putting up with my whims and whiles.

So Nancy drove us along highway 1 because I’m afraid of heights! We spent the night in Monterey at the Intercontinental and had a nice ocean view. I felt a bit queasy so we had a soup and cheese plate at the hotel. The next morning was beautiful, gorgeous ocean views and a Starbucks around the corner.
hotel monterey
As we left we stopped at the Cafe la Strada to pick up a lunch to go. It is part of a very nice hotel which looked very exclusive (and expensive).
We are sitting there now on our way back to LA.

From Monterey we drove along highway 1 past Santa Cruz and up to San Francisco, with beautiful vistas along the way. Our first stop in SF was Erin’s place in Greenbrae which is above the Golden Gate bridge on a hill.
Golden Gate Bridge
We met her and her wonderful son Alec at the Bon Air shopping center and then followed them up the hill in the dark. Brad was in Boston visiting his dad who is very ill. We ate a great salad Nicoise and had a chance to catch up.

I think it’s been more than 10 years since we last saw each other (before Alec was born, and he is now 9). Erin is a documentary film producer. We’ve been great friends since going to UPenn together (University of Pennsylvania, in Philadelphia). We also worked together on documentaries for schools at the time. Erin has been working for the Teaching Channel, making documentaries in schools and producing resources for teachers across the country. She is so passionate about her work, it is really inspiring!
Erin, Alec and Monty
They have a wonderful dog named Monty, part border collie and australian shepard (Erin correct me if I’m wrong!). He is 15 years old, has a soft beautiful coat and is very sweet.

We had a leisurely morning, had coffee at Peet’s, and walked around the neighborhood by the water with Monty. Later on Nancy and I went into the city looking for a Paul Frank store (Nancy loves Lucius the monkey!). Unfortunately it was shut down. Now the only store we know of that is still open is in Kuala Lumpur. Perhaps when we visit my dad there we can go there…. Since that store was closed we went into Banana Republic, Nancy bought a nice winter jacket and a shirt and skirt for me. Thanks to the lady helping us I think we got a huge discount: 25% off the clothes, another 20 for taking the card and 10 for buying a tote bag. Not bad!

At night we met Erin at her friend Mark’s boat in Sausalito harbor. We also met Gary and Armand (not sure about the spelling). It was fun to have a pineapple juice on a beautiful boat in the bay! Heard some great stories.
Mark and Alec
Alec wasn’t feeling so well though, so we ate at Erin’s house. Alec got worse and wasn’t feeling so good. He’s such a great and smart kid, we were very impressed by his navigational skills!

On Sunday morning Nancy and I drove across the Richmond bridge to meet my friend Laura. Laura and I met at UT Austin where she did her master’s and I did a year in the PhD program. We had some trouble finding her house but once we did we had a great time talking with Laura, Jeff and their beautiful daughter Lucia.
Jeff, Laura and Lucia
Laura worked as a communications director for a non-profit but is now considering a career change and working on radio interviews. Jeff is an audio engineer at Dolby and told us about the next generation of theater sound! Lucia seemed happy to serve everyone (she is nearly three and so beautiful!).
Our visit was short but great fun! We talked about doing a series on people who are 80+ and active – an idea Erin and I came up with.

We went back to Greenbrae to pick up our bags, say goodbye to Erin and Alec (who was still sick) and left with lots of lemons from their lemon tree.
lemon tree
One of them fell out of my arms into the street and rolled down the hill (a lost lemon!).
Erin and Sheila
Next we drove into the city to meet Laurie in the park. I wanted to see the Japanse Tea Garden again, one of my favorite spots in the city. As we drove along Presidio it became apparent that left turns are not allowed! In fact, it’s almost impossible to make a left turn anywhere in SF!

Laurie was already waiting for us! She’s been to Holland a few times to see us, had been at our wedding in 2005 and again a few years later. She’s such a trooper! She moved to San Ramon because of work, but the work isn’t that great and she misses San Diego. Me too!
Laurie and I worked together at HP back in 96-98. She’s specialized in training and management at high tech companies so if anyone knows of a great company in San Diego let us know!

We walked circles in the Japanese tea garden, thinking it was much bigger than it actually was.
Laurie and Sheila in the Japanse Tea Garden
Then we decided to go have drinks at a mexican place: guava juice for me, ice tea for Nancy and (free!) sparkling water for Laurie. We ordered nachos but they were tossed in a super spicy chili sauce that was way too hot for all of us. So out with the nachos and in with their home made chips, which were a bit too hard for my taste. We decided to eat sushi and looked in the guide book for a good sushi place. There was one on Geary – “no frills and fresh fish” – that sounded good so we headed there. We had to wait for 40 minutes outside to get a seat, but boy was it worth the wait! The best sushi ever! We had salmon avocado rolls, tempura shrimp roll and the spicy tuna tartar with mango. It was divine.
Shrimp tempura roll
At about 9 we dropped Laurie off at the BART station on Market so she could take the train home and we went on our way to Monterey. Which is were we are now.

Today is the first cloudy day since I’ve been here (this is my 9th day here). So we’re taking it easy. We may visit Carmel and then head back to the 101 to Santa Barbara/or drive on to LA. We’ll see and I’ll let you know. Today is President’s day, so Happy Presidents Day everyone!

Forgotten, lost and found

Dear friends,

I had promised to write you after my appointment at the hospital but to my shame I missed it. I thought it was at 3 PM but it was in the morning so for the first time in my life I missed a doctor’s appointment. When I called it was no big deal and I had my appointment for the 26th and 1st of March already lined up. I asked the secretary if I still needed to come to have my blood levels tested but she checked with the oncologist and it wasn’t necessary.

Apart from prickly fingers (it’s called the hand-foot syndrome where you get red hands and/or feet that feel sensitive to hot and tingling sensation) and the occasional nausea I don’t have any side effects.

On Thursday I went to visit Alice. Victor called me when I had nearly arrived to ask about the keys to his car. I had taken the spare one but he couldn’t find his keys and he had to go to class. Fortunately he found them in time or else I would have had to turn back.

It was great to see Alice, her mom and stepmom. And Arthur has grown a lot – he weighs what a 3 month old baby should weigh, even though he was born at 33 weeks. He’s a really beautiful and sweet baby, likes to be held by his parents and when sitting in his seat he smiles and is very quiet. Perfect baby!

Alice is doing much better now that her dosage of Oxyplatin has been lowered. She is also taking Xeloda (Capecitabine) but a bit more than I am because she is taller. We talked about all the things we are and have been going through and had a few laughs as well. She was quite an interesting case for her hospitals because few people under 5o have colon cancer and combined with pregnancy made her something of an attraction. Fortunately she is doing better now, and has chemo until April. We talked of writing a book together which seems like a fun and useful thing to do in the coming months.

Later on Ingrid and Erwin came by and we had a nice talk. But at night I felt tired and had a slight fever.

That night I repacked my suitcase, following my husband’s advice that I could always buy what I need in LA. So I left the casual clothing and backed what I consider the bare necessities (bathing suit, dress, silk shirt, toiletries, 1 pair of nice shoes, 1 pair walking shoes, 2 pants, 2 shirts and underwear) but he considered it overkill. “You only need your toothbrush and underwear” I remember Victor saying. Unfortunately, I couldn’t find my prescription sunglasses anywhere!

The trip to LA went smoothly. Nancy had arranged a business class seat with her airmiles so that I could sleep. It was great. The vegan meal (closest they had to vegetarian options) turned out to be a huge green salad followed by stir-fried veggies, broccoli and rice. I was pretty full and had enough greens to last me a week. When I collected all my personal belongings, just before we landed in Chicago, I lost my iPod nano in the chair. Took the chair apart but still couldn’t find it. The cabin crew helped me, even the purser sat on the floor to try to get to it but no luck. I waited till everyone was off the plane and then asked the customer service lady. She asked the mechanic to help and he went into the plane with her. 5 minutes later the purser triumphantly held up a small item, “look what we found!” and yes, I had my ipod back. Nancy had given it to me years ago, so it was great to have it back.

The transfer in Chicago went smoothly, got a break at the passport control when they took us to a special newly opened lane. Only the security check took forever and people got somewhat irritated having to wait so long (took an hour). The plane was delayed waiting for baggage, so it was no problem. The flight to LA went smoothly. At Schiphol I bought a book at the last minute called “The Unlikely Pilgrimage of Harold Fry” by Rachel Joyce, about an ordinary man who does an extraordinary thing: he decides to visit an old friend who is dying of cancer by walking across England. Oddly enough, at one point he meets an oncologist in Bath who explains the difference between a primary cancer and a secondary cancer, and gives the example of a primary breast tumor with a secondary tumor in the liver (which is breast cancer, not liver cancer). And that is exactly what I have. So odd to read about it in this way.

At LAX I was picked up by a driver and car which Nancy had arranged. It was raining and about 12 degrees Centigrade. I was in her appartment at 7.30 PM. Nancy came home an hour later, and pretty soon I fell asleep.

This morning I woke up well rested. Today is a big day for her at the Grammy’s with two all-star medley performances. But first we had some Trader Joe’s cereal and now we’re off to the Coffee Bean.

New energy

Dear friends, my sincerest apologies for not writing sooner. January has been a busy month for me, one in which I’ve done more than in the previous months!

In short, I’m feeling very good, better than I’ve felt in months, at least since I found out I have metastasized breast cancer.

A quick summary of the medical progress so far:

  • On January 18th, Victor took me to the hospital for a meeting with my specialist, Dr. Baars. She was positive about my blood values. The liver values continue to drop:
  • My bilirubin is down to 10 (was 11 on dec 21st, and 16 on nov 21) – this shows that the liver is functioning nearly normally.
  • The other liver values (Alkaline phosphates, ASAT, ALAT, Y-GT) are still higher than normal but much lower than before – these reflect the liver damage caused by the cancer and by the treatment.
  • Dr. Baars explained that the treatment has caused the formation of connective tissue in the liver.
  • The only thing to cause minor concern are my low white blood cells (leucocytes) which should be between 4.0 and 10.5 (10E9/L) but are at 3.3L. This is the effect of the capecitabine. This is still high enough to continue treatment, but I am to take the pills 12 days instead of 14.
  • My next appointment is on February 6th, and after I return I will get scans on February 26th and an appointment with Dr. Baars on February 28th.
  • This past week I started the second course of medication.  I’ve experienced some side effects, minor nausea, tingling hands at night and insomnia, but nothing to worry about.

In addition, Dr. Baars very kindly wrote a letter on my behalf for my trip to the US with Nancy in February. In the letter (for a medical professional if the need arises), she says the following:

“After the treatment with i.a. Mitmycin-C the condition of the patient has been improved considerably. The liver function nearly normalised. The patient still has a large breast carcinoma, liver metastases and lymph node metastases. Because of the improved liver function she was able to receive systemic treatment. We started mono therapy consisting of Capecitabine given during two weeks twice daily. After one week rest the patient will continue with the next course. The plan is to re-evaluate the patient after three to four courses. If she reacts favorably to the treatment given we can consider loco regional treatment for the large breast carcinoma.”

In other words, if this treatment works, then I might qualify for other treatments, such as radiotherapy or hormone therapy.

During the first three weeks I experienced no side effects at all, which gave me a lot of energy to do new things. Among other things, I assisted my good friends Mark and Jill with a workshop, which was great fun. Nancy and I went to Aken, to the Carolus Thermen. The waters are spring-fed and more than 70 degrees centigrade at the source. In the swimming pools, the water is 35 degrees centigrade (95 fahrenheit). There was an option called the Karawanserei, which we tried out. It looked quite exotic in the picture with sand and warm lights, but turned out to be a room with murals of a desert, the sand was gravel and the lights were super bright. They played some soft music in the background. A very odd experience altogether. The next day we took a quick look at the cathedral where Charlesmagne was buried on January 28th, 814 (almost 1200 years ago) and then stopped by Starbucks to enjoy some coffee and hot chocolate.

My friend G took me to Museum de Pont in Tilburg to see an exhibit by Anish Kapoor – very worthwhile, incredibly impressive! It was a lovely day, sunny and lots of snow, but the museum was tucked away in a residential neighborhood so was somewhat difficult to find.

Nancy celebrated her birthday quietly in London with our mom, and promised(!) me to celebrate it in June. She’s never liked having a birthday in January and with the snow it has not inspired her to give a party. Nancy has arranged a flight for me to LA using her air miles (thanks Nancy!) so I will leave on February 8th, and return on February 25th. I plan to help Nancy on the Grammy’s on the 9th and 10th (mostly by making Starbucks runs for the talent staff in the office!). On the 13th, we’ll start driving along the Pacific coast highway (aka PCH or Highway 1). Our first stop will be  the Coffee Bean in Santa Barbara (yes, Nancy is a big fan!) and on we drive to Cambria where we will spend the night. The next day we hope to catch a tour of Hearst Castle which, believe it or not, I have never visited in the 6 years I lived in California. Next we will drive to Carmel where we plan to visit the Point Lobos State Reserve. Next is Monterey, with Cannery Row, the Aquarium and lots of John Steinbeck novels for me (which I plan to buy in LA because I think 8.99 for an ebook isn’t worth it compared to the real thing).

And the latest news from The Netherlands: our Queen Beatrix is retiring as Queen on Queensday this year (April 30th) in Amsterdam in the Nieuwe Kerk (New Church which was founded in 1409), and her son Willem Alexander will become King, and his wife Maxima Queen of The Netherlands. The New Church is used as a museum, not as a church. Queen Beatrix was (in my humble opinion) a great queen, who has always demonstrated kindness, respect, courage and a great deal of professionalism. I especially like the fact that she is a sculptor. Our country has been a kingdom for 200 years, end of this year, and this coincides with her 75th birthday this year. Queensday is our national holiday which we celebrate on April 30th, which was her mother’s birthday, because like Nancy, her birthday falls in January. Next year it will be celebrated on April 27th.

As we say here “Orange boven!” (which translates somewhat awkwardly into Orange on top – the royal family is called van Oranje, of Orange). Not everyone here will share my opinion, but everyone is welcome to comment on my blog!

On that note, I’ll leave you all to enjoy the rest of the week! I promise to write next week after I hear the results.