Category: Hospital

posts about the hospital

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Update


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 http://www.sheilaghosh.com 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

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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.

 

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Drug company: Ailing 7-year-old Josh Hardy will get medicine – CNN.com


Update from CNN: Josh Hardy will get the medicine he needs after all!

Kudos to @chimerix and Ken Moch for helping this boy and his family! I think it is an admirable decision by this CEO to help this child, even though he had previously stated their position. It is also a reminder that no matter what, it sometimes is necessary to change one’s point of view.
http://edition.cnn.com/2014/03/11/health/josh-hardy-drug-study/index.html?hpt=hp_c2

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Making our government’s IT work


I had a very interesting day yesterday I thought I’d share with you in two posts. This post is about my work.

First I had planned to go to The Hague but since there were accidents on every road surrounding our little town of Eemnes I decided to work from home. I’ve been working for Logius for 9 months now on standards for data exchange. In november and december I completed the new architecture for Digikoppeling (for the die-hards, the Dutch version is available on www.logius.nl).

I’m currently interviewing experts on the trends they see in eGovernment and specifically for data exchange. It’s interesting because the work is now moving from the “back-end” to the “front-end”. Where our eGovernment services have been focused on creating a services oriented architecture (an IT infrastructure for government organizations to work together), we’re now moving to creating actual value (smart services) for the end-users.

For those of you not in IT, a services oriented architecture aims to develop reusable building blocks (modules based on web services) so we don’t have to build entirely new systems every time the structure of our government changes. The experts I interviewed I have come to know over the past year (some longer) and when I see them they always inquire after my health. It’s very kind and makes me feel good. I often wonder what will happen once the medication stops working, but these thoughts never last long

Just a bit of background about what’s happening in our government. It is common in The Netherlands to move responsibilities and public services from one organization to another. This is of course an expensive solution to problems because organizations need to adapt to their new responsibilities and need to buy new IT systems. We are in the middle of new major changes in our public services.

The Revenue Service is struggling with the (re-)distribution of additional stipends for low-income households (the system for stipends for rent and health insurance doesn’t work and will be changed again soon).

Starting in 2015 all social services for children and youth, and healthcare services for the elderly and chronically sick will need to be organized by the local municipalities.

I’m a member of a team that is working on developing key IT services once and reusing them so that we can avoid buying huge closed IT systems which don’t work when things change. The trend now is towards smaller web services and dynamic data services. Many people (myself included) want to be able to do everything online and on the road using our smart phones and tablets.
But government services are very complex. The rules and regulations are complex and contain a lot of exceptions. This means that any time anyone needs something – a permit, information, or has a complaint – many types of information needs to be assembled from various sources and needs to be assessed. Besides being big administrative organizations, our government also has many laws, rules, exceptions and policies, which are not always “programmable” and which change frequently. Just think of the tax laws which are updated yearly.  This move to smart services will be an interesting development to follow. By 2017, all dutch public services need to be accessible online, so there’s not a lot of time left.

My assignment is to write a new vision for our data exchange standards but the real challenge will be to make this all work in a way that is much easier than it is now. It’s an interesting and dynamic area and it is rewarding to work for a public cause.

On a more personal note, I’ve been following the eHealth trends. On January 21st, Nancy’s b-day, I attended a seminar on giving patients access to their health records. It was an interesting day and I had the chance to talk with some colleagues from Logius, some people I knew from other projects, and with information managers from hospitals. There are still very few patient portals: Medische Gegevens and IedereDagBeter are examples of patient portals (Dutch only). Since it is a subject that combines my professional expertise and personal experience, I try to keep up to date. A project leader from Radboud Medisch Centrum explained the plans for Hereismydata (Dutch) in which your data from all sorts of sources – such as Runkeeper, wearable devices and more – are combined to create a dashboard for you (and your doctor). Monday morning I spoke with a former colleague who now works for a national healthcare organization about the developments in this field. It could also be a topic for further study. For now, I will stick to patient advocacy using social media.

Next: Our Zonta Children’s Concert is coming on March 9th! Please come!

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Checkup


On January 11th, Victor and I had visited the exhibit by Henri Le Sidaner here in the Singer Museum in Laren. Le Sidaner worked around the turn of the 19th century in northern France. He combined impressionism with intimate compositions (called intimism) and painted some very beautiful scenes, with muted pastels, twilight with pink shimmers and canals along pretty villages. Very inspiring.

Last Wednesday I went to the hospital for my check-up. My mom met me there, so I had some company. The checkup went smoothly, all values were fine. It seemed to me the liver values were a bit higher but all within range. My oncologist also checked my lungs, liver and thought it all looked and sounded ok. My next appointment is in two months, March 12th. The week before I am scheduled for a CT and an MRI scan again.

Afterwards, my mom and I went to Nancy’s place for a bit. We stopped by Leafde (a nice little store near Nancy’s house) where I bought two small gifts for colleagues who just had babies (two dads!). My mom took me back to my car and we drove to a store on the way back. I parked my car on the street there and bought a nice jacket and silk blouse on sale. But when I got back to my car someone had driven the mirror off my car: it was hanging by a few wires. Fortunately the garage was on the way home (my mom took the tram back into the city) so I didn’t have to drive too far without a mirror. The guy at the garage taped everything up with black duct tape. That night, Victor and I went out for a lovely dinner together.
Thursday I worked and Friday I met a friend of mine for coffee. She told me about a dear friend of hers who had just passed away in November. She had cervical cancer and had fought bravely for over 3 years, but in the end got pneumonia and couldn’t get better. There’s nothing one can do or say to help, but I can only imagine the hurt her family must feel.

This past weekend I had a chance to relax. I wrote a little, drew a few pictures, did some laundry, went for a run.

Since then, Victor’s been studying hard for his exams. Friday is a big exam day, and next week on Tuesday he has two exams. I hope all goes well.

Nancy is in LA now, working hard on the Grammy’s and a special show the day after. I’ve been thinking about our trip last year and how special it was. Time has gone by so quickly, I wonder how this coming year will be for all of us. Tomorrow is Nancy’s birthday – here’s a happy b-day to Nancy from all of us!

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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!

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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

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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”.

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Long time


Dear friends,

It’s been a long time since you’ve heard from me. I’ve been so busy (and feeling good) that I haven’t been in touch. April was a full month, filled with joy for me but also some sorrow (the bombing in Boston made me sad) about what’s been happening in the world. My dear friend Laurie was actually close to the finish line with her friend Judy when the bombings happened.

I’ve been feeling well the last few weeks. The cancer is decreasing and stable, and I am now on new medication. I had several job-related interviews in April. One involved going to a Hippo partner day and I saw two ex-colleagues from Capgemini, which was unexpected and fun, and of course the Hippo crew.

I’ve got a job – can you believe it! – working in The Hague for a government agency on a part-time basis, thanks to Mark from Peopleware, who set up the meeting. I’m working 2-3 days a week which is great. UWV has been very cooperative. Also thanks to Arie for his help with my letters!

April just flew by. My dad came to visit me on his way home from Houston to Malaysia. It was wonderful to see him. He’s doing well and has a brand new research center with state of the art equipment.

We met also met Larry and Marilyn from LA who celebrated their wedding anniversary in Holland, and stayed in Nancy’s appartment. I met them the afternoon of the Hippo partner day and my mom took them to our house for a brief afternoon tea. It was a rainy afternoon but we went to Laren and had some poffertjes (a dutch treat consisting of tiny pancakes with powderd sugar and butter! They are wonderful people and I really enjoyed meeting them. I also reconnected with my Zonta club and volunteered at the Fair Work festival with Evelien. Fair work helps young people who have become a victim of unfair employment, bordering on slavery. The festival opened with a dance – a merengue – and workshops. We were asked to help with the styling workshop which was a great success. The young ladies were busy with creating their personal mood boards – something I learned from the styling workshop for Tanaquil’s bachelorette party, with Jorinde, a stylist in The Hague. After the moodboards they could select clothing from the tables – very old fashioned items but they liked them nonetheless. That really opened my eyes – how little is needed to help these young women who have so little and often have a negative self-image.
My friend Esther treated me to a wonderful lunch in the Bakker’s Winkel in Zoetermeer. It was the same place my mom used to take us for a treat back when we lived there (1980-1981) and back then it was called Twenties. The interior was much the same, small marble tables (used for sewing machines) and a very old furnace in the kitchen. They added a glass house with grapevines, very light and airy. I really enjoyed it!

For our wedding day we met up with our friends Ronald and Mariette, and had a great Indian dinner at the Taj Mahal in Bussum. I discovered that I can’t handle spicy foods anymore, a side effect from the chemo I’m sure. The next day I attended an investing workshop by Marcus de Maria at the Krasnapolsky hotel; he is a great public speaker, but I found the selling of the training a bit too much. I learned a lot, but skipped the next session and had dinner with Nancy instead at Mappa, a nice Italian place John had introduced me to (for a Penn/Wharton dinner in March). On April 27th, my sister in law invited Victor’s family over for a wonderful family dinner in honor of Thib, Victor’s dad’s 89th birthday. We saw Paul and Isabelle and their daughter Catherine from Munich, and Robin and Miriam and their son Luis from Mallorca, and Arnoud. Sylvia was very busy helping her mom and serving us; she is now in LA doing research and staying with a friend. Sebastiaan came from Groningen and Annet and Barbara joined us as well; they left for France the next day.

We had a great Penn event at the SkyLounge with a view over Amsterdam on April 29th. I made lots of little cupcakes for Nancy and Anne to sell at Nancy’s house. April 30th was the big event: Queen’s day (my Dutch friends know all about this but for my international friends this might be interesting). This year was sunny but cold so I watched most of the ceremony on tv – first the abdication and then the crowning of our new king and queen.

May was a bit more relaxed for me. My mom celebrated her birthday in Paris with my sister. Victor and I went to the Louwman museum with our friends Tanaquil and Pieter and their children. It was very impressive and the Alfa exhibit was excellent. We had a wonderful meal afterwards, and then watched the war commemoration ceremonies (may 4th). Nancy took Barbara, Henriette and me to Beyonce’s concert, a special thanks to her friend Alan who made this possible. It was absolutely spectacular. She is amazing, and a true professional who gives everything to her fans! When she sang Survivor I just had to sing along. Jelle and Anne were there as well, and thanks to them I was able to sit for a bit. We had the best location, stage right, right next to the stage: Barbara and Henriette even touched Beyonce’s hand! – but it was a bit tiring to stand all that time. It was a great show and wonderful experience.

Unfortunately this month we also lost a dear friend – Henk – who was in his 80’s but sadly very sick. We remember him as a positive enthousiastic gentleman, and think of his widow often. On the positive side, Henriette turned 20 last Friday. And we have a few more birthdays this week.

I feel very lucky and grateful that I’m alive and kicking, to have my energy back and to feel good. I’ve been catching up on things that I haven’t been able to do for a while. Also I set up a new business (a one-woman show, as a friend calls it!) which I named AsIsToBe. And I’m trying to help two friends with their ventures, and having a good time assisting. Victor is very busy with his studies, he’s started on his thesis, and is also working as an assessor for part of the time.

I’m sure I’m forgetting someone or something but I will update you again soon. Tomorrow I have to get my calcium levels checked at Tergooi because of the risk of osteoporosis. Friday is my next appointment at AVL. I noticed some minor side effects today – also felt a bit tired – but that could be because I cleaned my car, and the bathroom, and did the laundry. It sounds a bit strange but it’s nice to be able to live a normal life again, and I’m enjoying it! Thanks for hanging in there with me. I will try to report back soon!

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Time to share


Dear all,

Last friday I had another appointment with my oncologist. Because Victor is studying hard for his exam on Wednesday I drove myself and my sister Nancy met me at the hospital. It’s getting harder for the nurses to get blood from my veins, they have to use the little needles (they call them butterfly needles here) and the nurse had to try my right hand first, and then decided to try the left one. I was very relieved when the blood finally started to flow. Apparently I have narrow veins and thick walled arteries.

My oncologist seemed pleased enough with the results. The liver values are a tad higher (bilirubin at 12, white blood cells at 3.8L, other results aren’t in yet), but she says that’s probably due to the treatment I’m taking now. I will get two more cycles of the Xeloda (Capecitabine) but I can take them 12 days instead of 14 to reduce the sensitivity in my hands and feet. After these two cycles of three weeks she’ll start me on hormone therapy, which takes a few weeks to take effect. This wasn’t an option before because of the liver, but I guess we have the time now, which is good news. In 4 weeks time they’ll make new scans. So I have appointments on April 12th with another oncologist (Dr. Baars is attending a congress in London), an MRI on April 22nd (our wedding day), CT on April 25th, and the results on May 3rd. Add to that the Penn alumni drinks date at the Skylounge in the Doubletree hotel on April 29th, Queens’ day on April 30th, a seminar on investing on the 23rd and I’ve got April filled before it’s even started. Not bad for someone who intends to live in the moment and stopped using a calendar altogether a few months ago!

On March 17th and 24th I had several friends over for a high tea. Of course we made way too much food, but it was a lot of fun. It was nice to see friends together as well. Many thanks to my mom and sister for taking our dog Flo for long walks. I had also signed up for an introduction to yoga course at the Yoga Lounge in Hilversum (thanks to my cousin Ineke for the tip!). I really enjoyed it! It was a nearly private lesson since there were two students (including me!) and one teacher. She was great. I’m convinced now to sign up for more classes! The first session was challenging since my feet were hurting badly but I found Sunday’s session a lot more relaxing than I had expected.

Last night I had a sudden moment of sadness. What to do? What are my passion? Do I really want to write? Sometimes I do, and sometimes I think it’s a waste of time. What if I start yet another book and can’t finish it. But then I decided today that even that doesn’t really matter. I just ordered “The War of Art: Break Through the Blocks and Win Your Inner Creative Battles” by Steven Pressfield. Only I won’t get it until May 8th, because I also pre-ordered Star Trek The Next Generation Season 3 on Blue-Ray – yes I am a die-hard Trekkie (only TNG though), and that doesn’t come out until April 29th. Fortunately its region free, because the Downton Abbey Season 3 that nancy bought me in LA is not! Does anyone know how to make our Philips blue-ray player region free (its region free for DVD;s but not for Blue ray disks). Anyway, I’m rambling and didn’t even tell you the news. Got called by a headhunter. A small company in Amsterdam is looking for a Content Management lead and want to meet me. I told him I’m still recovering from an illness and if I can work (which I’m not sure about) I can only work part-time. They still want to meet me so I have a meeting on Thursday. In the afternoon I have a Liferay User group meeting, so should be fun! I will keep you posted!

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