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,
Sheila

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.

http://www.uwbloedserieus.nl/aanvraagformulier.php?id=130

Or see http://en.wikipedia.org/wiki/Alkaline_phosphatase#Elevated_levels

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 http://www.cancerresearchuk.org/about-cancer/type/breast-cancer/secondary/

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

 

Sheila at AVL
Sheila at AVL

Back


Yes, I’m back. I’m sorry it’s been so long since I’ve posted anything on my blog.

The last months of 2014 were hard for me. We lost another dear friend of ours, Patrick, who died far too young of cancer. He and his family have been very close friends of Nancy and myself since we were teenagers and feel like our extended family. When I was sick, they were there for us. His illness surfaced when it was too late for treatment. He passed away end of November. I wish I could say or do something to be supportive of his family. It makes me feel sad and angry at myself at the same time for not being there.

Just before Christmas, my father in law passed away. He was 90 years old and had a long and fulfilling life.

I’ve been working full-time since January and my work is satisfying. It means having to do less work for the societies that I’m involved in. I have had to reconsider how much time I spent on these activities.

I had scans in January which showed good results. The medication is still working and the cancer is still in remission. I couldn’t wish for better news at this time.

Right now, Victor and I are visiting my father in Malaysia. Thanks to my mom who is looking after our dog Jaap. Without her watching him, I don’t think we would have gone on this trip. My dad is doing well and working hard as a professor at UTP, where he leads the Geophysical Research Center. Wednesday we head back to Holland. I’ve been able to do some writing here, and have been reading a lot. Just finished Stoner by John Williams, Perfect by Rachel Joyce, and am now reading On Liberty by John Stuart Mill. This last one is a favorite of mine, and I highly recommend it to all who are wondering what is happening to the world we live in.

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 http://dying.about.com/od/thegrievingprocess/fl/Words-of-Inspiration-Grief-Loss-and-Mourning.htm

 

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).

MBCNbuzz

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

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

ASCO 2014- what’s new in research for metastatic breast cancer


The metastatic Breast Cancer Network is hosting an online webinar featuring Dr. Dizon who will talk about news from ASCO 2014 for those living with metastatic breast cancer. ASCO is the American Society of Clinical Oncology and information on their 50th annual meeting can be found at http://am.asco.org/.
The webinar will be held this Thursday June 12th and will start at 18.30 PM Amsterdam time. Sign up below or via mbcn.org.

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News from ASCO 2014:

What Is Relevant for Those Living With Metastatic Breast Cancer?

Thu, Jun 12, 12:30 PM – 1:30 PM ET

Featuring Dr. Don Dizon, Associate Professor at The Warren Alpert Medical School of Brown University and a board certified medical oncologist.
Register for webinar

Sponsored by MBCN and SHARE Cancer Support

Why you should register:

  • Learn about the latest research papers, trends and issues at the recent ASCO (American Society of Clinical Oncology) meeting in Chicago—specifically directed to those of us living with mbc
  • Listen to an informative, interesting and engaging speaker, Dr Don Dizon
  • Easy to register and easy to follow directions on how to call in to listen
  • Opportunity to ask questions

Hope you will join us!

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MBCN is a national, independent, patient-led, nonprofit advocacy group dedicated to the unique concerns of the woman and men living with metastatic breast cancer. We strive to help those living with stage IV breast cancer be their own best advocate through providing education and information on treatments and coping with the disease.
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MBCN is a 501(C)(3) not-for-profit organization.
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