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!
Sheila

15 months


I just received some magazines from the Dutch Breast Cancer Association. The editor very kindly sent them to me after we corresponded via e-mail. I was looking for a way to contribute and volunteered to do something (for lack of a better idea). In the issues she sent me were some interesting articles. One of them is about a new study in which women who have a metastatic diagnosis initially, are able to select an operation. In The Netherlands, if you get diagnosed with metastatic breast cancer there is no operation at all. So I still have both my breasts (sounds a bit odd but that’s the case); no mastectomy took place. Apparently a study showed that if women are operated, their survival rate increases from an average of 14 months (not-operated) to an average of 31 months with an operation. Neither sounds very appealing I admit. And falling into the former category, I’m very happy to announce my 15th month of survival this month! A bit of an odd celebration but I’m happy just being alive!

 

BVN themadag 12 oktober


Begin forwarded message:

From: Mariette Bergmans <info>

Subject: BVN themadag 12 oktober

Date: 30 september 2013 (wk40) 11:32:51 CEST

To: Sheila Alting van Geusau/Ghosh <sheilaghosh>

Best BVN lid,

Op zaterdag 12 oktober houdt Borstkankervereniging Nederland de themadag hoop & vrees voor mensen met uitgezaaide borstkanker en hun naasten.
Het thema is dit jaar ‘samen verder’. Daarbij kun je denken aan samen verder met je naasten, met je behandelaars, je werkgever en collega’s. Maar ook aan reïntegratie en zingeving.

Het programma van deze themadag, die gehouden wordt in conferentiehotel Kontakt der Kontinenten in Soesterberg, bestaat uit lezingen, keuzeworkshops en een informatiemarkt.
Onderwerpen zijn onder andere:

  • nieuwe ontwikkelingen op medisch gebied
  • in gesprek met je behandelaar
  • reïntegratie en werk
  • gezonde voeding
  • intimiteit
  • zingeving

Bovendien is er ruime gelegenheid voor informeel lotgenotencontact.

Het complete programma vind je op http://www.borstkanker.nl/themadag_hoop_vrees_2013

Er zijn nog plaatsen beschikbaar voor deze themadag hoop & vrees!

Je kunt je aanmelden tot en met vrijdag 11 oktober via http://www.borstkanker.nl/themadag_hoop_vrees_2013.
De eigen bijdrage voor deze dag is 15 euro p.p. (inclusief catering).

Is het programma voor jou niet interessant, dan kun je misschien iemand uit je omgeving attenderen op deze informatieve themadag voor mensen met uitgezaaide borstkanker en hun naasten.

Met vriendelijke groeten,

Namens de projectgroep themadag hoop & vrees

Mariette Bergmans
BVN programmamanager

BVN themadag 12 oktober.doc

Inspirerend interview met Kelley Gleason, Stage IV Pancreatic Net Survivor, Hero of Hope – WhatNext


http://www.whatnext.com/blog/posts/kelley-gleason-stage-iv-pancreatic-net-survivor-hero-of-hope?goback=%2Egde_103317_member_277108965#%21

Kelley Gleason, Stage IV Pancreatic Net Survivor, Hero of Hope

Friday, Sep 27, 2013

by GregP_WN

Categories Cancer Stories

WhatNexter Kelley Gleason is a Stage IV Pancreatic Net Survivor of 5+ years. Greg Pierce, WhatNext Community Mgr talks with her about the journey with cancer, treatments, surgeries and persevering through it. Take a look and share with anyone you know that has recently been diagnosed with cancer to let them see that YES, you can survive even a “late stage” cancer.

Not only is Kelley a 5+ year survivor of a Stage IV cancer, but she also is dedicated to giving back and trying to make a difference through volunteering with the American Cancer Society as a Hero Of Hope Speaker. She is a member of the Great West Region which makes up several States in the NorthWest US.

A doctor’s fight to prevent breast cancer! Read this post and spread the word.


Dr. Kathleen Ruddy is determined to find the answer to the question: Why?
She is the founder and president of Breast Health and Healing, which is dedicated to preventing breast cancer. Of all the funds raised for breast cancer research, only 2% is spent on research to find the causes of breast cancer and to prevent it. Dr Ruddy and her team have researched the causes and uncovered 70 year old research into the causes: breast cancer may have been caused by a virus. A new vaccine is ready for Phase I clinical trials, but few hospitals and researchers are ready to test it. Help spread the word!

breastcancerbydrruddy.com/?page_id=2149

Paris and scans


Dear friends,

I forgot to tell you about Paris. Paris was wonderful. The Stanford alumni meeting was held in the Intercontinental Le Grand in Paris on sept 7th. I really enjoyed it. The Stanford Alumni Association did an outstanding job in organising the event and the mini lectures were incredibly inspiring. I went to Cliff Nass’ lecture on multitasking – he was my mentor at Stanford and was really happy to see me! He’s done research on multitasking which shows that people who think they are very good at multitasking usually aren’t; in fact, multitaskers are usually not very good at remembering anything they do. People who never multi-task are better at it than those who do it all the time. His advice: do 1 thing for 20 minutes at a time! I was very glad to hear this because since I’ve been sick my concentration has become better but only if I focus on 1 thing at a time. And in fact, I try to do only 1 thing for about 20 minutes and that seems to work well for me.

Dr.Nass tests the Google cars (the ones that self-drive) and Google Glass and is a very interesting person to listen to. It made me wish I had done my PhD with him (I did my Masters at Stanford, but I’m a PhD drop-out, gave up after 1 year at UT Austin). There was a meetup afterwards of people interested in consulting in developing and emerging countries. Perhaps something will come out of this.

That night we enjoyed a river cruise on the Seine which was beautiful. I met some great people. The next day Nancy, my mom and I enjoyed Starbucks and Chez Paul bread. I get a bit flustered when I see homeless people so I gave a beggar who had no shoes on the Champs Elysee a loaf of bread. What a contrast!

Last Friday (Sept 20th), I went to the AVL for scans. The AVL (Anthonie van Leeuwenhoek) is our national cancer research hospital. My last scans were in April, so it’s been a while. My mom met me there and watched my stuff. I had just sent off the last version of our draft Architecture for Digikoppeling (our national protocol for data exchange) to my colleague Tom who sent it on to our review committee. So at the hospital I had a bite to eat, they have a nice cafe. I sometimes forget that when I first arrived here I couldn’t eat at all. That was nearly a year ago (Oct 17th) and I remember smelling the pizza that the young man across from me (yes in Holland male and female patients share rooms) had ordered while all I could manage was a nutridrink with fake strawberry flavor over ice! I still give thanks every day that I can eat normally again and live a normal and healthy life!

So when I take off my dress and boots and my wedding ring (no metal in the MRI) I remember what it is like to be sick. Not to feel sick, fortunately that time has passed. The nurses inject the IV and connect me to the machine for the contract fluid. The MRI takes about 20 minutes and makes a lot of noise. There is a poster on the wall that you can see (I have to lie face down in the machine with my breasts in a plastic frame) so they must use some sort of mirror like a periscope but then flat. The poster shows a picture of Oscar Wilde, but the text is too small to read.

After the MRI, I get dressed again. The IV tube stays in my arm while I wait for the CT scan. After about 50 minutes the nurse comes to get me. The CT scan is quick. This time its face up in the machine. I notice the fluid in my veins because it gives you a warm feeling, and feels like a full bladder.

After the scan, the IV tube is removed and I put on my boots (dress stayed on this time). I suddenly noticed blood gushing out of my arm. I press down in time to stop the flow and go back to the nurse to get new gauze and tape. Next a quick stop to get my blood checked (there are no other patients so it is very quick) and I’m done. It is nearly 5 pm and my mom comes with me. We drive to Nancy’s house. It’s nice to be able to relax a bit and we order Thai for dinner. At home in Eemnes we have no good Asian food nearby so we almost always cook ourselves. But this is a nice treat.

I’ve been working on getting my websites updated and found someone to help me with the system administration of the server. Also, I’m starting to learn how to program Python. Last Tuesday I went to a PyLadies (Python Ladies) meet up in Amsterdam (@Marktplaats.nl). It was great to meet other women in IT and I’m motivated to start learning Python and Django!

Next Wednesday I have a meeting with Dr. Baars and will learn the outcome of my scans. I will update my Bucket list as well!

On October 12th, I’m attending the seminar “Tussen Hoop & Vrees” (Between hope and fear: for patients with metastatic breast cancer”.

A very quick update


Dear friends,

Just a quick update to let you know I have not forgotten you! I went to the hospital for a checkup on August 19th, and all was fine. The blood results are still stable. End of September I will get new scans. My next appointment with Dr. Baars is on the second of October.

In August I gave myself a birthday present: a windsurfing set! My very own set, always wanted to have one. Should have taken a picture but I forgot. I went windsurfing twice so far, but the wind conditions haven’t been very good for a beginner like me.

On August 28th I turned 44 and celebrated with a few close friends and family. We had it catered by Pomodori, an Italian style catering company based in Baarn. It was a wonderful day and we had a great time.

I’m busy at work but am also taking time out to relax. Tomorrow I’m off to Paris with my mom and Nancy. I’m going to a Stanford alumni get together and looking forward to having a weekend off!

Take care,
Sheila

London Highlights (and tips!)


We had a wonderful vacation in London from Wednesday July 24th through Tuesday July 30th. I will share a few of the highlights and share a few photos as well. Image

Nancy and I flew to London and arrived around 12.30 am. We walked around a bit, had coffee at Cafe Nero and walked to Gray’s Inn. Gray’s Inn is one of the Inns of Court where lawyers have been trained since the days of Henry VIII’s. Edward de Vere,17th Earl of Oxford (I’m writing a screenplay about him as the man behind Shakespeare) was educated here as well. It is an oasis in the city, lots of locals and lawyers eat their lunch here on a sunny day. In the summer time there is an open air restaurant here which serves beautiful lunches between 12 and 2.30 when the Inns close for the public.

Nancy and I saw a beautiful and impressive exhibit about Pompeii at the British Museum. It made me realize the Romans were not all that different from us (apart from modern conveniences such as medicines and internet!).

Meanwhile, Victor drove with the kids to Calais, took the boat to Dover and drove on to our B&B Pretty Maid House. Sebastian had left his passport in Groningen and came later by plane and hitchhiked from Southend Airport to our B&B!

We all met up at the Pretty Maid where Andy and Sue Carr gave us a warm welcome! We had wonderful rooms and the most delicious breakfast ever! A great place to stay.

The next day we visited Heaver Castle near Edenbridge: an absolute must see if you are ever in Kent! We witnessed a swan attacking a mother duck and her six ducklings, which was horrifying to see. It was very sad and I kept wondering if I should intervene. The swan bit a duckling and we all thought it had died; one visitor walked into the water and saved the duckling, it lived. Very humbling experience.

The castle itself was beautiful, with many original Tudor period furniture and painting of Henry VIII, Elizabeth, Mary, and Anne Boleyn of course. It is quite a large house and tells the history of Anne and her family, and shows all 6 wives of Henry VIII as life size wax figures.

Afterwards we drove into London, dropped our stuff off at the Royal Foundation of St Catherine (an old cloister now hotel) while Sebastian and Henriette took the train to Victoria. We met at the Starbucks by Tower Hill and ate healthy asian food at Wagamama’s with a view of the river.

The next day the kids went shopping and we went to Borough market, a covered organic market behind London Bridge station that has been there for over 400 years. We bought a huge loaf of freshly baked French bread, local cheese and tomatoes and tomato chutney for lunch. Then we met the kids by Madame Tussaud’s where I picked up their tickets. We all went to Regent’s park to eat our lunch. It was a gorgeous day and we had a lovely picknick. Sebastian wore his UK flag suit and had his sushi. The others ate their lunch and we ate the bread and cheese. It was great fun! The kids then left to go to Madame Tussaud’s and Victor and I walked around Regents park a bit while Nancy relaxed on a park bench for a while. Regents Park is absolutely beautiful; all the roses were in bloom and there are many beach chairs for hire. We went back to Tower Bridge Apartments where we had a huge 3 bedroom executive appartment while Nancy went to Sloane square. She would meet the kids at the small Starbucks later to show them how to get to the Tower Bridge Think Apartments.

In the meantime, I went to do some grocery shopping. We had a nice dinner at the apartment. That night Victor and I had tickets for Lee Ritenour and Dave Grusin’s concert at Ronnie Scott’s in SoHo and Nancy had arranged for a car and driver from Addison Lee to pick us up and drive us there and back. It costs around 15 pounds each way, but was wonderful and since the tube doesn’t operate after 12.30 pm also necessary. We saw London from the car by night, which is very different than during the day. The London Eye is lit by purple lights. There were huge advertisements covering entire buildings for the new film Wolverine, which I want to go see.

Lee Ritenour and Dave Grusin were wonderful! I especially liked Dave Grusin’s rendition of Turn out the stars by Bill Evans. Lee Ritenour played old favorites and songs from his new album Rhythm Sections.  Ronnie Scott’s was a cozy, intimate jazz club. It was cold due to the AC and outside it was hot so I was a bit cold in my salmon colored summer dress. We had a great time, but had to leave at 12.30 since the car was waiting for us.

Saturday morning we had coffee at the Starbucks by St Catherine’s dock, which is to the far side of Tower bridge and is a nice quiet area with a view of yachts. I didn’t feel too well (nausea) and had to go back.

I had the same thing the next day but I took some tablets and the nausau passed. Victor took the kids to the British Museum and then the kids went to the Westfield shopping mall @Shephard’s bush. I met Nancy and Victor at Waterstone’s (a huge and wonderful bookstore) later on. We had a high tea there with scones, one bite fruitpies, and sandwiches. Nancy left from there to Heathrow for her flight back home.

On Sunday Sebastian and Valentine went to the Natural History Museum and the girls went to the Tower of London. Victor and I went to the Starbucks first (near the Tower on the SouthBank side) and then walked along the Thames. Victor took a lot of pictures.

I went to Tate Modern and visited the exhibit Poetry and Dreams which was about modernism, surrealism and dream-like paintings. I thought it was a very inspiring and eclectic exhibit but I missed the poetry. It got me thinking about how poetry is so very distant from our lives, somewhat inaccessible. You have to know where to find it, but there are no galleries or museum dedicated to poetry. I decided to write some poems to go along with the paintings. A few pieces really impressed me:

  • Germaine Richier, France, 1902-1959, made sculptures of women, a bit like Giacometti but fatter with thin arms: Diabolo 1950 and Water 1953-4
  • Picasso: Grieving woman, 1937, detail from Guernica
  • Alexander Calder – small mobiles, maybe studies for his larger pieces. These appeared so innocent and whole. There was a huge Calder sculpture at Penn (University of Pennsylvania where I studied).
  • Meredith Frampton (British, 1894-1989) Portrait of a young woman 1935, Marguerite Kelsey 1928 – very elegant and sophisticated realist paintings, almost too perfect
  • Meraud Guevara (1904-1993) seated woman with a small dog (1939)
  • Sidney Nolan (1917-) Inland Australia – a red almost alien landscape. You can feel the heat from the desert.
  • see http://www.tate.org.uk/art/artworks?sid=1258
  • I also enjoyed the photography by Graciela Itubride (1942 Mexico) and wrote some poems to go along with them.
  • http://www.tate.org.uk/whats-on/tate-modern/display/graciela-iturbide

Unfortunately no photos were allowed, or I could have taken some to illustrate my poems. I will publish my poems in a separate post. Can’t seem to stop writing.

Anyway, we continued along the Thames, crossed the river over the Millenium bridge and followed the Thames until we came to Somerset House. If you’ve never been here before, go the next time you’re in London. It is a huge palace like museum, relatively quiet and has wonderful exhibits. Some are free. I loved the photo exhibit about fashion photographer Erwin Blumenfeld. The photos were printed from digitally restored transparencies as there were no prints founds in his archives. He was a very humble man, a true artist who managed to make art from his work as fashion photographer.

http://www.somersethouse.org.uk/about/press/press-releases/blumenfeld-studio-new-york-1941-1960

Somerset House also has a fountain built into the courtyard where many children were playing in the water. From Somerset House we walked to Covent Garden which attracted huge crowds so we skipped that and took the tube back.

That night the kids all went to the cinema at Westfield Stratford to see Man of Steel which they really enjoyed. On the tube they were singing and a young lady named Charlene heard Barbara and asked her to call her. How exciting!

The next morning Victor drove back to Pretty Maid with the kids while I went to the National Portrait Gallery. It’s one of my favorite London museums. This time, I saw nearly everything. I first looked at the contemporary portraits, some of which looked like photos but turned out to be oil paintings! Very impressive. There were portraits there of writers and actors such as Harold Pinter, Doris Lessing, Germaine Greer, a self portrait by David Hockney and more. Also very interesting was the exhibit Creative Commons. In my field this term means that the intellectual property is public domain, here it was used to connect pupils from schools to famous people from their neighborhood, a novel idea.

The picture that inspired me most was a photo of Gandhi (1896-1948) who was trained in the UK as a lawyer, had worked in South Africa but stayed at Kingsley Hall for a convention for 3 months in 1931. Kingsley Hall Powis Road was a centre for the poor.

There was a portrait of Mary Wollstonecraft (1759-1797) who was a fervent and eloquent supporter of women’s rights. Her daughter was Mary Shelley, author of Frankenstein or the Modern Prometheus 1818. The story goes that Mary and her husband Percy Bysshe Shelley stayed at a lake with George Byron when they challenged each other to write a ghost story. Mary wrote the beginning of what was to become Frankenstein. Her husband and friend very so delighted that they encouraged her to finish it. I really like that story. Percy Bysshe Shelley – a poet best known for his Ozymandas – was an advocate of love and disliked for being an atheist and for having abandoned his first wife while she was pregnant, the reason the Shelley’s moved to Italy where he died in 1822 while boating.

Op wikipedia staat het volgende over hem: “Tijdens de wanhopige en onrustige jaren in Italië schreef hij zijn beste werk. Het weerspiegelt zijn idealisme en zijn hoop dat er verlossing mogelijk is door de liefde en de verbeelding. Volgens hem is er geen zekerheid, alleen hoop.”

http://nl.wikipedia.org/wiki/Ozymandias

I saw the Tudor paintings, did my best to appreciate the entire 17th and 18th century galleries and the Victorian galleries. I liked the portraits of Albert and Victoria, especially the fact that Queen Victoria herself presented the copy of the portrait of her late husband personally to the National Gallery. I thought that was a very kind gesture on her part. See the movie The Young Victoria, it is a kind portrait of two young people destined to rule.

I left to visit the Benjamin Franklin house which, despite its proximity to Trafalgar Square, is absolutely impossible to find. It is located on Craven Road, just behind some tall buildings. I had just missed the tour so I will visit it next time. I’m a big Benjamin Franklin fan. He said “Energy and persistence conquer all things” and I think that is very true indeed, it certainly has been true for me.

On that note I will end this post which has gone on far too long anyway, being a very haphazard mix of all sorts of ideas and experiences. I hope next time to create something a bit more coherent for you, my loyal readers.