Dear friends,

Here’s a quick update to let you know the results from my appointment this morning.

My oncologist informed me that my liver seems to be stable; there are signs that the two tumors are slightly smaller and that they are responding to the Tamoxifen. On the downside, there were three new round growths visible in my right breast, all about 5 mm in size. Not so big, but confirmed malignant. My oncologist signed me up for a PET scan which will take place in two weeks time. For the PET scan you have to take some radioactive sugar (yum) which causes cancer cells to light up. This should show if there are any other areas where the cancer may have spread.

Depending on the results, I will either get radiation treatment – if there are no indications of new metastases – or systemic treatment (meaning chemo), if there are mets. Either way there is a treatment plan coming up.

My main concern now is that I don’t want to miss our vacation to Boston in June. Victor and I will be visiting our dear friends the Caledonians, who were so hospitable and so much fun last time we were there, in September 2014. I will dig up some pictures from that trip and post them, since it was a spectacular spot and many happy memories!

Yesterday we celebrated King’s day, which was memorable for being so cold (low 40’s). I think it even hailed shortly, but I was inside then, snug and warm. King’s day is an outdoor event; we went to hear some live music in the village and had a beer (just one). It was nice to catch a few stray rays of sun, but once the sun set we went back home. Hopefully it will get warmer soon!

Tomorrow I leave for a short break to London, to visit my sister and accompany her back home. She is finishing up her Masters at the London Film School and has some exciting news which I hope to share with you soon. Thanks for all the nice notes and comments! Ciao!



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!



Another hospital visit

I find it increasingly difficult to write about myself in this blog. But today is a much needed update about my medical situation. First of all, last week on Wednesday I had an MRI-scan and CT-scan at the hospital. My last scans were in October 2013, so almost 6 months ago. Since then, the bloodtests have shown that the tumor markers have been relatively low, and the liver values stable.

This time, I was very tired after the scans. I just wanted to sleep right after the scans. It might be because I’ve been going to bed too late lately, but I think the contrast fluid had something to do with it. Also, the IV needle was a bit painful as it pressed against my wrist bone. The young male nurse who had placed it was very nice, I recognized him because his picture (and that of other colleagues) decorates the fence outside the hospital around the area where they are building a new addition. So each time I go in I see their faces. Nice to know they photographed real doctors and nurses instead of models!

Yesterday my specialist shared the results with me. There were no tumors visible on the MRI scan, so the hormone therapy did its work. I find it quite remarkable that the cancer in my breast has basically disappeared, without any form of surgery or radiation. It makes me wonder if hormone therapy might be a way to get rid of the cancer for other women as well?

The CT-scan showed a few tumors in the liver which remain stable. My specialist showed me the photos when I asked to see them. It’s a bit hard to see, since the CT-scan consists of horizontal cross-sections of the torso which are shown in 2-D. She pointed out that there were several lymph nodes which looked swollen. At least it is cause for some concern and she wants to have another CT-scan made of the intestines and stomach as well. So my scan is scheduled for April 30th.

In addition, I asked for a bone scan, which is scheduled for April 2nd. I’ve been having some pain in my pelvis. It could just be the result of my new dedication to running (I try to run once or twice a week) in which case it might just be muscles aching. Or it could be a side effect of the letrozole (the hormone therapy – which is actually a hormone inhibitor). Just to be safe, I’m getting a photo and a bone scan.

Sheila jogging in Eemnes
Sheila jogging in Eemnes

In any case, she told me not to worry. She’s keeping a close eye on my health and if there is cause for concern she will switch to another type of therapy.

So altogether, good news: the tumor in the breast is no longer visible and the ones in the liver are stable. I will keep you posted as the results come in.


Tests – Thursday July 5th

Back at Tergooi Blaricum at 9.15 for the MRI scan. Again an injection, but this time, the needle was taped down so that the contrast fluid could be injected while I was in the machine. Face down, I went in with headphones on and eyes closed. The machine made funny and loud noises, each was different, when the scans were made. It lasted about 25 minutes. Afterwards, I could get the CT scan made, but it turned out they needed the Creatine bloodlevels first. So Victor and I went back to Poli 5, Chirurgie (surgery) where it was very crowded. After 20 minutes I could finally pick up the form to then go to the lab. It was 10.45.  The CT scan was scheduled for 11.40, and the lab needed 1 hour to process the blood. Just in time! For the CT scan, I could keep on my shirt and legging. Again, a needle and contrast fluid was injected. I had to breathe in deeply (was never very good at that). The contrast fluid tasted funny, strange to feel it go through your body. Twenty minutes later I was done. Outside I ran into Annemieke, a Zonta member.

Victor and I picked up some lunch at the Organic store in Laren and had a nice lunch with Nancy and Ellen. Nancy and Ellen took the dogs for a nice long walk and Victor made a wonderful dinner (again).

On Tuesday, July 10th, I have an appointment to hear the results. I’m a bit anxious about it. But also relaxed: nothing to do but wait.