On Monday my mom drove me to the hospital. I have an inner ear infection which should heal on its own (says my GP) but it still causes pain and makes me deaf in one ear.

The results were stable, no clear difference from last year’s scans. I was very relieved to hear it. Since I was the last patient of the day, my doctor had more time to talk and so we talked about the industry and how difficult it has become for her to enroll patients in studies because of all the requirements the pharmaceutical companies impose, probably to avoid lawsuits or issues with the results. She works with international researchers on cancer studies and has a lot of experience in this area. My mom suggested to me that this would be a good topic to examine. I agree, although I have no prior experience in this area and it is a tough topic.

I’m doing some consulting work in health care policy, focusing on IT. But IT cannot solve issues such as these. And I can’t solve them either, I’m afraid.

So my medication seems to be working well, and I intend to take full advantage of the good things life has to offer.


Towing along

January was an extremely busy month. The year started off with car trouble at the Arena where Nancy and I watched Star Wars. The ANWB towed and repaired my car so I’m super grateful to them!


We had visitors from the US – Greg, Nicole and their sons Jeremiah and Isaac – came to visit us from Montana.

They took care of Sebastian when he was an exchange student there in 2009-2010 and now came to visit us. It was nice to meet them and have them stay with us. The boys were so well behaved. Unfortunately we had many rainy days. Annet took them to the beach. Victor took them to the Military museum in Soesterberg, to the Dierentuin Amersfoort (zoo) and to Amersfoort. Greg loved kibbeling, Nicole loved the kringloop winkels (second hand stores) and they all had a good time with Sebastiaan, Irene, Annet, the kids, Jaap and us. Jaap was very sad when his pals left….

We also had the privilege of joining the Tante Mientje lunch organized by my friend Yvonne. Tante Mientje is the name of their boat, named for a favorite aunt. And I joined my friends Gail, Willianne and Anita for the Slow food film festival where we saw two excellent movies about cooks: “Fucking Perfect” about Sergio Herman and Chef. Both I highly recommend! Last but not least, my mom bought a boat! It’s a Porta boat which means you can take it with you. It folds up to the size of a surfboard and has a small electric motor. It’s a birthday gift for Nancy but I know I will have a lot of fun with it too when the weather gets better! Just towing along!


After they left I came down with an ordinary common, cold- I’m lying here on the couch with an exaggerated sensation of feeling sorry for myself. It’s definitely a cold, with all the signs of an inner ear infection, aggravated sinuses and coughing up mucus. I’ve been feeling lousy for 5 days now. Unfortunately, Victor can’t help me because he is upstairs in bed with the flu. Poor guy.

The pain in my ear was so bad these past few days that it occurred to me that maybe Van Gogh cut off his ear because of an ear infection. I guess we’ll never know. Tomorrow I can visit my GP.


This afternoon I’m getting the results of my scans from January 28th. As usual, I went into the scans with a slight apprehension. This time because I was running late. A traffic accident had blocked the highway and I had to take the scenic route, which was beautiful but busy. Next time, when I’m not driving myself, I’ll take some pictures.

I had to take off my shirt and bra but could wear a cardigan. The thing I always forget when going into the scan is to bring a cardigan with wide loose sleeves. The nurse inserted the needle into my wrist but I couldn’t pull my sleeve over it, because of the tubes sticking out.

Fortunately, I could do the CT-scan first, but had to cross the corridor half naked. This machine always makes you feel like you have to pee, because the contrast liquid they inject makes you feel warm as it passes through your arteries. It only takes 10 minutes or so. Of course, I already had to go to the bathroom because of all the fluids you have to drink 2 hours ahead of time. but had to wait till the scans were over.

A friendly doctor asked if I would volunteer as a test subject for a new type of mammogram (one that doesn’t crush your breasts between glass plates!), so I did. Traipsing over the hospital corridor half naked isn’t very good for your self-esteem but it keeps you busy. I had to lie down on a machine which looks like a self-tanner but was covered by gel. The scans were done in 60 seconds per breast and this machine is definitely much woman-friendlier. I hope they start using it soon.

Back in the MRI room I had to wait for my turn. The MRI makes a lot of noise and I was given earplugs. Maybe that’s what set off my ear infection?

After 20 minutes or so I could get down and was disconnected from the machine. The IV needle could stay in for the blood test. This time I got dressed and waited in line for my blood to be taken. I’ve been reading about start-ups that only need one drop of blood to run hundreds of tests. Here three tubes were filled to the max. I was surprise by how bright red my blood looked. Must be good then. The lady who helped me took the needle off and bound the wrist with a tape that doesn’t cling to your skin. Such a great invention!

Afterwards I felt very groggy and decided to have some lunch. I always feel exhausted after the scans, but this time I felt weak as well.


The next week Victor and I followed two Liferay training courses. Liferay is a very useful portal and collaboration suite, and I plan to start using it more for my projects. Work is going well, but very busy. I find it hard to switch from one project and client to the next and am having a hard time deciding what to do. Working 5 days is proving to be too much for me, and I also want to start work on a PhD. In the meantime, I’ve found several business partners with whom I can work on new opportunities. This is good news, but also takes time and has not yet resulted in paid work.

A quick update on my proposed Ph.D. project

I went to Dr. Julia van Weert’s oration, in the Old Lutheran Church in Amsterdam. She spoke passionately about health communication with vulnerable people and launched her Amsterdam Center for Health Communication at the University of Amsterdam. Afterwards, she was very glad to see me and I promised I would contact her for an appointment.

I’ve decided to focus on the topic of empowering cancer patients and survivors through technology, which is a relatively new research topic surprisingly enough. I also look for inspiration to frontrunners like dr. Rosalind Picard, from MIT, who is an inventor and a professor in the area of affective technology (emotional technology), a subject I studied while at Stanford. Also at the Universiteit Twente, several scholars are making progress in this area.

I need to figure out my planning now. I still need to work to earn money to live. But research also takes time. Alas, the eternal (writer’s) dilemma. Any tips are much appreciated!



Looking back

Dear friends and family,

This past year has been a good one for us! This was a nice change from 2014, when things were not looking so good for friends and family. Your good wishes for a happy 2015 have come true!

Sheila’s health has been stable all year. The medication has kept the disease at bay. No reason to doubt her continued good health in the near future.

We went to Bangkok in March to participate in the Wharton Global Forum. Wharton is one of the top 3 business schools in the world.


yearreport 2015 photos

Sheila is a member of the organizing committee in Amsterdam (as a Penn alumn) which is hosting the Wharton Global Forum in june 2016 in the Beurs of Berlage, the old Amsterdam Stock Exchange. We joined the cooking school Blue Elephant as part of the program in Bangkok. The three days there were spectacular. Besides learning a lot, we heard the Thai prime minister speak in Thai and watched fireworks. After Bangkok, we went to Penang to visit our friend Bommy and then visited Sheila’s father Dr, Deva Ghosh. He is over 75, but still active als full-time professor seismophysics at the Technical University of Petronas, in Ipoh, Malaysia.

Sheila also visited Bruges this year with her mom and spent five days in New York visiting her sister Nancy. Our dog Jaap took us out to the woods or the moors to play with the ball. End of august we joined a fantastic cruise gemaakt to Norway. We highly recommend this trip, since you see the fjords and nature up close. (Also, we got very spoiled in those 10 days)! The pictures on the other side show our travel.

Sheila has several longer assignments as an independent consultant (‘Business/IT architect’) for the Dutch government and for a government health care agency. Victor has expanded his legal company with new clients. He has followed several courses to keep his tax law credentials up to date (he is a registered tax law specialist).

Victor is also busy with his hobbies. He visited mr Nigel Webb in the UK for an exclusive Mark I event, traveling in his 1958 Jaguar Mark I with his brothers and our neighbor Rob and his son. het Brooklands museum. Nigel hosted more than 200 guests with a bbq and live jazz music. Victor also drove a few classic car rally’s with friends, including the yearly Lions Rally in Blaricum. Victor has played a few concerts and recently joined Bruce Skinner’s big band as drummer. This requires weekly practice and study!

Sheila is planning to work on a PhD in the area of Health & ICT, focusing on improving patient experiences. This is thanks to encouragement from uncle Frans and aunt Annemieke Alting von Geusau. Uncle Frans is professor emeritus in international law and wants to be informed of Sheila’s progress. Victor has to keep her focused! ‘Time is setting priorities’, according to uncle Frans. We visited them to see the 1816 diploma of the knighthood of the family. This is part of a family project to create a family book. Victor’s cousin Alix in Austria is working on this and is organizing the family reunion sometime next year, to celebrate the 900-year old Von Geusau family.

The ‘kids’ are now adults and doing well. Eldest son Sebastian has a great girlfriend (Irene) and has found his passion: he is studying to be a teacher at the teacher’s academy in Groningen. In addition he worked at a callcenter and in a bar. Irene is studying medicine and doing her internschip in a hospital in Deventer. Daughter Henriëtte (22) is enjoying student life as a member of the UVSV-sorority in Utrecht. She is studying culture and communication and works at a pharmacy. Son Valentijn has started as a first year Psychology major. He is very motivated and getting high scores on his exams. He works as a waiter in a restaurant in Utrecht (Broers). Daughter Barbara (18) has a great boyfriend Luuk who is smart and a good trumpet player. She is in her last year of high school and will take her exams in May. She is also taking singing lessons from Claudia Streza, who first gave her lessons when Barbara was 9. Luuk passed his exams (Gymnasium) last year and has a jazzband with his two brothers. Barbara wants to study medicine and sing with Luuk’s band. She also works in the Albert Heijn ( a nice grocery store) where Luuk is teamleader. Of course all of us, including their mom Annet, are very proud of these wonderful young adults!

Finally, we are planning to spend our Christmas with Sheila’s family. Her aunt Nivedita, and cousins Rahki and Payal are traveling all the way from California to join us, Nancy, and Sheila’s mom Ellen this Christmas. We’re so happy to see them.

We wish you a great Christmas and a very happy 2016! Focus on the things that matter most to you and make you happy!

Lots of love and happiness,

Sheila en Victor

Last check this year

On December 4th, I had my last visit to my oncologist this year. My results were stable, as they have been these past 2,5 years since I’ve been taking Letrozole. I’m glad I’ve been doing so well on this medication.

Since January, I’ve been working nearly full-time. I’ve had nice breaks this year though. Victor and I went to Bangkok and Malaysia in March of this year, in May my mom and I went to Bruges for a weekend, in August Victor and I took a cruise to visit the fjords in Norway (lovely!), and in September I visited Nancy in New York for a few days. All in all a great year!

I will post our end of the year X-mas letter to all of you after completing this post.

End of January I will have my yearly CT and MRI scans. I’m expecting this to be stable but you never know. The proces is exhausting though, and after the scans I’m usually beat.

We’re planning a family trip to Malaysia and Bali in the summer of 2016. We’ll drop by my dad of course, and try to visit the Taman Negara forest as well. In Bali, we’ll take a tour past villages and less visited sites. If we have time, we’ll try to go to Lombok as well. Victor’s great grandfather – Paul August Alting van Geusau – died in the Lombok expedition of 1894. We have a book describing the war and his death at age 27. He was a poet and writer as well as a lieutenant in the Dutch army. His son was raised by Victorine, after whom Victor was named.

Sebastian, Valentijn, Barbara and Henriette will join us and we’re all really looking forward to this big trip. Unfortunately Jaap – our Dalmatian – can’t come along, so hopefully my mom will be able to watch him.

I have decided, with encouragement from Victor’s uncle Frans, to get a Ph.D. I have tried before but stopped and probably a good thing too because back in 1994-95 I picked the wrong topic (telecommunication in the third world). Now, my focus will be patient empowerment through technology. I first have to find a promotor who is willing to sponsor and guide me. And for that, I have to write a research proposal. So I’ve got lots to do before the new year starts!

Lots of love for all of you!

Don’t open previous post, but this one is OK!

Dear friends,

I’m very sorry about this. There’s an option in my blog to send a message directly to the blog. This happened this morning by email. I’ve removed the post and the link but if you’ve received a mail with a link DO NOT CLICK on it.

As for me, I’ve been working far too hard. I’ve decided to slow down a little.

Nancy will be visiting next week. And on Wednesday next week I have another check up.

I’ve gained too much weight and now need to change my diet and work out more. Started doing a bootcamp lite here in the neighborhood and plan to start running again at a regular schedule.

Take care,

Good results

On Monday I had a check-up at the hospital. Fortunately my mom had pulled a ticket number for me from the machine because there was a long line at the blood lab.

When the doctor saw me at 4.30, she confirmed that the results were stable. Some values were a bit higher than last time, but still within the margin that she has set for me.

CEA at 8, CA15.3 at 14, Bilirubin at 8

My liver values are always too high, but that’s because my liver has been deeply damaged by the cancer tumors and then by the chemo. Just to share them with you, here are my liver values from Monday, compared to the values from 13 January 2015, and 11 November 2014, and the normal values for a healthy liver.


Liver functions Units Normal values Healthy liver 30 March 2015 13 Jan 2015 19 Nov 2014
Bilirubine umol/L <16 8 7 5
Alkaline phosphatase U/l <98 304 299 326
ASAT U/l <31 105 79 129
ALAT U/l <34 154 107 185
Y-GT U/l <38 115 92 98
LD-IFCC U/l <247 245 229 250

As you can see, the Bilirubin isn’t very high (for new readers, when I was diagnosed it was at 50!)

I thought I’d look up what the Alkaline phosphate values mean. The following Dutch site has a good explanation.

Or see

I found it quite interesting. A high value combined with a high Y-GT means the liver channels are obstructed which can be caused by cancer. If the Y-GT is low, the cause is more likely found in the bones.

Most sites may tell you something about a damaged liver, but rarely did I find a site that explains that this type of liver damage can be caused by (metastasized) cancer.

A well structured site that has information on secondary breast cancer is

If anyone has any questions for me, you can also contact me via Twitter @sheilaghosh


Sheila at AVL
Sheila at AVL

Losing a friend

On Sunday our dear friend Marc passed away. His sister and her husband had taken him back to their home from Canada. We had a chance to say goodbye to him on Saturday. He was tired and thin but still quick-witted. Sunday, his son arrived from Canada, just in time to see his dad one last time and then Marc died. He really stayed alive to see his children, although unfortunately his daughter couldn’t get here in time. I hope they will be okay, and I hope they know deep in their hearts how much he loved them. Marc supported me by mail when I got very sick. But his cancer kept growing while my medications worked. He was a reclusive man, who preferred to do things his own way. The last few weeks he thought a lot about his children and wanted to care for them. His sister did everything she could for him, caring for him every moment and arranging all the things he wanted to take care of. He had very few things in the end that he needed. A few pictures, his laptop. But even that he didn’t need anymore. It made me realize once again how very lucky I am, not only to have lived so well after my recovery but also to be able to enjoy life and being with my family and friends. Once I was living on the other side of the world, but I’m glad to be home. As for my health, everything is stable and I’m doing really well. I am working more hours, and doing more activities, but altogether I’m very happy. Tomorrow I get the results of my latest blood test and will give you an update.

A day of mourning

Today, our country is in mourning. We mourn the passengers and crew who died needlessly when MH-17 was shot down over the Ukraine by pro-Russian separatists. Our Minister of Foreign Affairs, Mr. Timmermans held an emotional speech at the UN, to repatriate the bodies of the victims. Today, at 4 pm, a minute of silence is held throughout the nation, as the first 40 wooden coffins arrived at Eindhoven airport. As I write this, the procession of 40 hearses is arriving at Hilversum. The coming days, as more flights arrive, the same ceremony will be repeated: a single bugle call – the military farewell – and each coffin is carried by military personnel from the plane to the hearses.

See the Dutch report here. See the CNN report here.

We did not personally know anyone on the plane, but many friends and colleagues did know one or more of the 193 Dutch victims. Many of them families with children who were on vacation. Three families lived nearby, in Hilversum. But there were victims of all nationalities, and we mourn all of them today.

As I write this, the procession of 200 hearses is arriving at Hilversum, where the identification of the bodies will take place. There were so many people along the roads, paying their respects to the victims. Not all victims have arrived yet. It really could have been any of us, everyone here is in a state of emotional shock.

All throughout the land, flags are half-mast. Here’s a picture of our flag at home:
vlag halfstok


See the In Memoriam here: rouwadvertentie-mh17

I find some solace in the words of John Steinbeck and Patrick Swayze:

John Steinbeck, American author
It’s so much darker when a light goes out than it would have been if it had never shone.

Patrick Swayze, American actor
When those you love die, the best you can do is honor their spirit for as long as you live. You make a commitment that you’re going to take whatever lesson that person or animal was trying to teach you, and you make it true in your own life… It’s a positive way to keep their spirit alive in the world, by keeping it alive in yourself.


both quotes are from


Where’s my clinical trial?

What a great blog post! Yes, there are quite a few of us living well beyond the 2-3 years life expectancy for metastatic breast cancer patients. For me, I just passed the two-year mark today (it was two years ago that I was diagnosed with breast cancer, the mets were discovered two weeks later).


by Ginny Knackmuhs, VP of MBCN

I’m one of the lucky ones, I know.

Although I was diagnosed with metastatic triple negative breast cancer 5 years ago, I have been on the same treatment regimen since then. No progression, just blessed stability. I hesitate to write that sentence or say it out loud—afraid I’ll jinx my good fortune, always mindful of the next scan around the corner, when everything can change in an instant.

Metastatic breast cancer (MBC), also sometimes called advanced breast cancer or Stage IV disease, is incurable, but still treatable. Oncologists like to say it is a chronic disease, but with an average life expectancy of 2.5 to 3 years, it certainly isn’t chronic yet. Give us 10 or 20 years of stable treatment and quality of life and we’ll be happy to call it chronic.

ImageNext week I’m going to ASCO in Chicago, the annual meeting…

View original post 390 more words


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