A pound of flesh


My operation (masectomy) took place last Thursday, July 18th. I chose not to have a reconstruction because I am allergic to antibiotics which are used to prevent infections when using sillicon implants. So the operation only took an hour and a half and I woke up shortly after.

The next morning I was discharged. From the first moment, I felt fine. Painkillers and paracetamol help, but some days I go without taking them and I feel fine.

Our friends Brad and Alec came from San Francisco to visit and provided ample distraction. The heat was unbearable, reaching 40 degrees, without air conditioning.

After a week, I’m getting used to looking in the mirror and seeing the scar. It is s-shaped and quite high on my chest. Below the scar the surgeons left a small bit of breast that was not affected.

It turns out they had to remove more than expected. I asked how much, and the surgeon said 521 grams. That is a pound of flesh. I think back to what Portia said to Shylock in The Merchant of Venice. You may take a pound of flesh, but not one drop of blood more. So that is what it feels like, although I’m very glad medical technology has improved since Shakespeare’s day.

I did some online shopping and found two very pretty prosthetic bathing suits by Sunflair, so far so good.

Have a great summer! I still owe you a post on my trip to Europa Donna in Milan in June. Will be coming shortly.

100KiKaKilometer – Actie voor KIKA: Help je mee?


Op woensdag 22 mei 2019 starten wij de EY-Parthenon Ringvaart Regatta, ‘s werelds langste onafgebroken roeimarathon. Acht jongens, en één stuurvrouw v…
— Read on www.actievoorkika.nl/100kikakilometer

Valentijn roeit morgen 100 km met zijn vrienden om geld op te halen voor Kika. Wat een bikkels! Wie helpt ze om hun doel van €5000 euro te behalen! #100KiKaKilometer

Valentijn is rowing 100 km tomorrow with his friends from Triton to raise money for cancer research for children. They have been training for months. Please help support them if you can!

Our house is for sale


Ons huis staat te koop: een mooi ruim gezinshuis (173 m2) met 4 slaapkamers, mooie tuin op het westen, voldoende parkeerruimte voor de deur en speeltuin naast het huis. Locatie: Eemnes, vlakbij Laren en Blaricum, 20 min naar Amsterdam, 15 min naar Utrecht. Internationale openbare basisschool om de hoek. Stuur het door!

Our house is for sale: it’s a lovely family home (173 square meters) with 4 bedrooms, relaxing sunny garden, lots of free parking and a children’s playarea next to the house. Location: Eemnes, close to Laren and Blaricum, 20 minutes to Amsterdam, 15 minuten to Utrecht, public international elementary school around the corner. Please share!

www.funda.nl/koop/eemnes/huis-40180109-dingenaarserf-3/

Patiënten symposium Ik leef! met uitgezaaide borstkanker


Patiënten symposium Ik leef! met uitgezaaide borstkanker op 27 oktober in Maastrict.

On October 27th, a patient congres will take place in UMC Maastrict about living with metastasized breast cancer. As a member of the expertgroup, I am co-hosting a discussion on working when you have metastasized cancer.

Please share this!
— Read on borstkankeragenda.nl/nl/pati-nten-symposium-ik-leef-met-uitgezaaide-borstkanker

Back again


For all of you who missed me, I’m back with another post. I’ll give you an update on 2017.

The biggest news is of course, the birth of my niece, Sasha Remi Westwood Ghosh, Nancy’s little bundle of joy. She is – quite literally – a bundle of joy, shining her bright smile since she joined us on this planet on May 25th, 2017.

In the beginning of May I went to London to visit Nancy. Nancy – who was 9 months pregnant – took me to see 3 wonderful plays:

  • Obsession with Jude Law, directed by Ivo van Hove, with the Toneelgroep Amsterdam, based on the Italian Ossessione from 1943. (Halina Reijn and Jude Law were excellent as Hanna and Gino whose love is doomed. Read the review here.)
  • Rosencrantz and Guildenstern are dead – the Tom Stoppard play came to live at the Old Vic (50 years after premiering there), and to laughs, as the audience (and reviewers) loved it. Daniel Radcliffe (a.k.a. Harry Potter) played Rosencrantz to great comic effect, although his counterpart Joshua McGuire, was even better.
  • Finally, we ended our London theatre season with Romeo and Juliet, at the Old Globe, which is much as in Shakespeare’s time, except it’s more hygenic now and probably smells better. The director had chosen a Baz Luhrman like staging and styling, with the characters wearing white and black, to modernize the play. I enjoyed it, although a more traditional styling would have appealed to me more.
  • All in all, every reason for working on plays once again. Armed with good books about writing for the stage, I left with Nancy to come back to The Netherlands.

Two weeks later, Nancy went into (hard) labor and gave birth to her daughter, Sasha Remi. Nancy was quite bruised and very tired, but did a great job in the weeks and months after to take care of little Sasha, helped by our mom, who is a great support in times of need.

Besides the good news, I also had a bit of a scare.  In May I noticed blood coming out of the nipple on my right breast, again. An echo and biopsy showed renewed growth of small tumors in the right breast. The MRI scans I had in May showed 3 different small tumors in my right breast, about 6 mm in diameter, together about 2,3 cm. They were in the same area as the previous tumor, so it’s hard to say if they were new.  Thankfully, the tumors in the liver were stable, so the Tamoxifen seems to keep them in check. My wonderful oncologist, Dr. Baars, suggested radiotherapy (bestraling) to treat the breast.

In June we visited our friends Laurie, Dana and Mary in Cape Cod, and saw Doug and Maurene, and Alice and her friends as well. We had a great vacation. I will upload pictures in my next post.

In July of 2017 I started 21 sessions of radiotherapy. The hospital is quite nice, and the room is lighted with LED lights in different colors. They try to make you feel comfortable. The machine is quite large, with a flat table you lie on. My arms went into braces and the machine turned around me. The actual radiation time only takes about 3 minutes, but the positioning on the table needed to be exact, since the angle of the rays was important.

I managed to keep working during the treatment. I worked in the mornings and then went to the hospital in the afternoons. Later in the week and in the month, Victor would take me. My mom drove me as well. I wasn’t too tired, although the daily travel takes quite a bit of energy.

During all these events, Victor was my support and took care of me, driving me places, and cooking wonderful meals to keep me going. I found it took all my energy to keep working, and had little left for other pursuits. Victor, in the meantime, wrote a book about how to implement the new European privacy law. Please check out his book here (and please share with anyone you think might be interested):

Implementation of the General Data Protection Regulation (GDPR)

After the treatment, I went back to work full time, but found it quite challenging. The program I’m working on is quite political, and the changing cabinet had impact on the governance. Also, our programmanagers were dismissed and we had to deliver results while waiting for a new program manager.

In October, Victor and I went to Edinburgh with Sebastian, Henriette, Barbara, and Valentijn to celebrate our 12,5 year wedding anniversary. Edinburgh is a wonderful city. We had a great tour guide – Bill Hill – who showed us all around his home town and told us great stories. We will definitely go back.

On October 26th, we went to a Simply Red concert, and it was a blast! Definitely had a great time. Mick Hucknall is very good live, after opening with jazz standards, and some older ballads, he went on to the classics, but also gave us a new song, simply called Queen – a tribute to Queen Elizabeth II.

The scans in November showed that all was stable. All tumors are still there but are no longer growing. I still have my checkups every two months. Dr. Baars has now left the hospital as she is retiring. I owe her my life, and will send her a thank you letter for all she’s done for me. For now, I leave you. Goodnight all!

 

Update


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!

 

Back


Yes, I’m back. I’ve been in a kind of “privacy zone” for the past year. This is partly due to Victor’s new occupation of privacy guru but also because I have had a tough year. On the one hand, I’ve felt really good. On the other, I have been working full time for 3 years now and it’s taking its toll. I have a hard time sleeping through the night, waking up around 4 am most mornings.

I also have some bad news to share. The cancer has woken up and is active again. I first noticed this last year around this time. I have my yearly scans in April and last year the scans showed a new tumor in the liver, about 23 mm big. By august, this had grown to 27 mm. Since the other tumor (3 cm) had shrunk to 26 mm, the radiologist concluded that the cancer was still stable. My feelings were that it wasn’t stable so much as dynamic. Just because one grows and the other shrinks doesn’t mean it’s steady. I just had scans last week and this past week. Next Friday, I will get the results from my oncologist.

Last year we took a wonderful family holiday in July and August. We visited Malaysia, first KL where I saw my high school friend Mike, then to Taman Negara where I sprained my ankle. Fortunately I could walk again the next day. And then to Ipoh, to visit my dad and Deloris. The kids had a great time and we all had lots of fun. Because of a volcano eruption our trip to Lombok was cancelled and we flew directly to Bali for the last 9 days. Since we arrived a few days early, we checked into a simple but very clean and pleasant hotel in Legian, close to the beach. We tried some surfing but the surf was quite powerful. After that, the kids went on a catamaran trip to a bounty island while we switched hotels. Henriette, Barbara and her boyfriend left a few days later and we traveled to Ubud with the boys. We had a lovely time, even ate vegetarian one night and had a good trip back.

Last december I switched to a new assignment. I now work for the Chamber of Commerce on personalized services for entrepreneurs and (small) businesses. I will keep you posted. For my Dutch followers: Happy Kingsday on Thursday!

Much love,

Sheila

Results


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.

January


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!

IMG_4699

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!

Cold

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.

Scans

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.

Work

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!