Category: Liver

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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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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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New energy


Dear friends, my sincerest apologies for not writing sooner. January has been a busy month for me, one in which I’ve done more than in the previous months!

In short, I’m feeling very good, better than I’ve felt in months, at least since I found out I have metastasized breast cancer.

A quick summary of the medical progress so far:

  • On January 18th, Victor took me to the hospital for a meeting with my specialist, Dr. Baars. She was positive about my blood values. The liver values continue to drop:
  • My bilirubin is down to 10 (was 11 on dec 21st, and 16 on nov 21) – this shows that the liver is functioning nearly normally.
  • The other liver values (Alkaline phosphates, ASAT, ALAT, Y-GT) are still higher than normal but much lower than before – these reflect the liver damage caused by the cancer and by the treatment.
  • Dr. Baars explained that the treatment has caused the formation of connective tissue in the liver.
  • The only thing to cause minor concern are my low white blood cells (leucocytes) which should be between 4.0 and 10.5 (10E9/L) but are at 3.3L. This is the effect of the capecitabine. This is still high enough to continue treatment, but I am to take the pills 12 days instead of 14.
  • My next appointment is on February 6th, and after I return I will get scans on February 26th and an appointment with Dr. Baars on February 28th.
  • This past week I started the second course of medication.  I’ve experienced some side effects, minor nausea, tingling hands at night and insomnia, but nothing to worry about.

In addition, Dr. Baars very kindly wrote a letter on my behalf for my trip to the US with Nancy in February. In the letter (for a medical professional if the need arises), she says the following:

“After the treatment with i.a. Mitmycin-C the condition of the patient has been improved considerably. The liver function nearly normalised. The patient still has a large breast carcinoma, liver metastases and lymph node metastases. Because of the improved liver function she was able to receive systemic treatment. We started mono therapy consisting of Capecitabine given during two weeks twice daily. After one week rest the patient will continue with the next course. The plan is to re-evaluate the patient after three to four courses. If she reacts favorably to the treatment given we can consider loco regional treatment for the large breast carcinoma.”

In other words, if this treatment works, then I might qualify for other treatments, such as radiotherapy or hormone therapy.

During the first three weeks I experienced no side effects at all, which gave me a lot of energy to do new things. Among other things, I assisted my good friends Mark and Jill with a workshop, which was great fun. Nancy and I went to Aken, to the Carolus Thermen. The waters are spring-fed and more than 70 degrees centigrade at the source. In the swimming pools, the water is 35 degrees centigrade (95 fahrenheit). There was an option called the Karawanserei, which we tried out. It looked quite exotic in the picture with sand and warm lights, but turned out to be a room with murals of a desert, the sand was gravel and the lights were super bright. They played some soft music in the background. A very odd experience altogether. The next day we took a quick look at the cathedral where Charlesmagne was buried on January 28th, 814 (almost 1200 years ago) and then stopped by Starbucks to enjoy some coffee and hot chocolate.

My friend G took me to Museum de Pont in Tilburg to see an exhibit by Anish Kapoor – very worthwhile, incredibly impressive! It was a lovely day, sunny and lots of snow, but the museum was tucked away in a residential neighborhood so was somewhat difficult to find.

Nancy celebrated her birthday quietly in London with our mom, and promised(!) me to celebrate it in June. She’s never liked having a birthday in January and with the snow it has not inspired her to give a party. Nancy has arranged a flight for me to LA using her air miles (thanks Nancy!) so I will leave on February 8th, and return on February 25th. I plan to help Nancy on the Grammy’s on the 9th and 10th (mostly by making Starbucks runs for the talent staff in the office!). On the 13th, we’ll start driving along the Pacific coast highway (aka PCH or Highway 1). Our first stop will be  the Coffee Bean in Santa Barbara (yes, Nancy is a big fan!) and on we drive to Cambria where we will spend the night. The next day we hope to catch a tour of Hearst Castle which, believe it or not, I have never visited in the 6 years I lived in California. Next we will drive to Carmel where we plan to visit the Point Lobos State Reserve. Next is Monterey, with Cannery Row, the Aquarium and lots of John Steinbeck novels for me (which I plan to buy in LA because I think 8.99 for an ebook isn’t worth it compared to the real thing).

And the latest news from The Netherlands: our Queen Beatrix is retiring as Queen on Queensday this year (April 30th) in Amsterdam in the Nieuwe Kerk (New Church which was founded in 1409), and her son Willem Alexander will become King, and his wife Maxima Queen of The Netherlands. The New Church is used as a museum, not as a church. Queen Beatrix was (in my humble opinion) a great queen, who has always demonstrated kindness, respect, courage and a great deal of professionalism. I especially like the fact that she is a sculptor. Our country has been a kingdom for 200 years, end of this year, and this coincides with her 75th birthday this year. Queensday is our national holiday which we celebrate on April 30th, which was her mother’s birthday, because like Nancy, her birthday falls in January. Next year it will be celebrated on April 27th.

As we say here “Orange boven!” (which translates somewhat awkwardly into Orange on top – the royal family is called van Oranje, of Orange). Not everyone here will share my opinion, but everyone is welcome to comment on my blog!

On that note, I’ll leave you all to enjoy the rest of the week! I promise to write next week after I hear the results.

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Good news!


Yesterday Victor drove me to the hospital and we arrived at 7.50 AM. I had to get my blood tests done, but the person ahead of me took a while, so I had to wait. A little after 8 I was done, and we went to the restaurant to have a bit of breakfast. They have delicious croissants, so now that I can eat everything, of course I had one.

At 9 o’clock dr Baars came to pick up us. She had good news for me. The blood tests showed that the chemo had worked, all the liver values had dropped significantly. My billirubin is now at 16, a normal value. Some of the other values are still too high, but she didn’t seem terribly concerned about those.

Here are some of the values:

Liver:

Billirubin: 16 (was 24 on oct 15th)

Alkaline phosfate (alkalische fosfaat): 745H (was 1660 H on oct 15th)

ASAT: 75H (was 144H on oct 15th)

ALAT: 69 H (was 86 H on oct 15th)

Y-GT: 479 H (was 723 on oct 15th)

LD-IFCC: 192 (was 402 H on oct 15th)

Other: CA 15.3 (tumor marker for breastcancer): 50 (was 95 H on on oct 15th)

My platelets were fine this time, but the white blood cells were on the low side, so she decided to go ahead with the treatment, but with a light dose of chemo. Dr. Baars also said she didn’t think a third treatment would be necessary, so it would be the last angio treatment. She wanted to see me in 5 weeks, but that is Christmas, so we have an appointment for December 28th. On the 21st, I have to go to get the scans done: an MRI to check the tumor in the breast and armpit lymph nodes, an echo, a CT scan for the liver, and a blood test. That way she will have the results on the 28th. She also explained what is coming next: a cure of Capecitabine, a chemo in pill form. I can take it at home. The cure will start on the 28th of december, I think.

This chemo is directed at the breast cancer, also in the breast and lymph nodes. Possible side effects are red palms or red and sensitive feet, mucositis (irritation of the mouth), diarrhea, and irritation of the eyes. So I guess I’ll take the Caphosol mouth rinse again to make sure I don’t get mucositis again.

So all in all this is good news.

After the meeting we went up to the fourth floor where nurse Daphne showed me to my room. I had a room to myself, which is a real luxury. A little later a doctor came and she placed the IV needle and attached the IV. She was assisted by an intern who asked me if she could watch the procedure. No problem, I said.

 

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CT scan and chemo #9


On Tuesday I had the CT scan. I had to drink a liter of water mixed with Joxitalaminezuur (a contrast liquid for the colon). And I couldn’t go to the bathroom an hour before the scan, which was scheduled at 10 AM in Blaricum. Well, we arrrived just past 9.30 and informed the receptionist I was present and had a scan at 10 AM. By 10.15 no one had called me yet, and I felt a need to go to the bathroom (which was not allowed until after the scan). We informed at the reception why it took so long, explaining I really needed to use the toilet. The nurse called the CT room to ask what was taking so long. Nothing. Turned out they had scheduled me at 8.30, but I was told 10 am. Instead of telling me when I checked in, not a word. Not even a call at 8.30. Fortunately, they could help me right away. I could keep on my t-shirt and pantyhose (no metal), they shoved an IV needle into my right arm, but it didn’t go in, so then switched to my left arm and that went fine. I was lying with my face to the ceiling. Fortunately, the CT is a roomy machine, that looks like a large hole in a solid machine. The table moves back and forth. During the scan, the IV which contains the contrast liquid is opened and I could feel the liquid move through my mouth. Also, it gives you a warm feeling, and the feeling you have to pee. The good news was that the scan was very fast, about 10-15 minutes. I got dressed quickly, ran to the bathroom and that was that.

The chemo on Wednesday went smoothly too. The nurses in this departmentment are specialized in placing the IV needles, so it doesn’t hurt as much as when other nurses do it. The architect was in my room, as was a lady who was getting her last chemo that day. She was in the mood for a party, but there were no balloons or champagne. The last gentleman coming in was very funny. This time my mom and sister both joined me. Everyone was in a good mood. The dietician came by and asked how my eating was going. Well, I gained about half a pound, ate all the things I used to avoid, like fatty, high caloric foods, but that’s what she had suggested. The ice cream I skipped, don’t eat that all that much. After I was done, we went to the tea house to eat lunch. In the afternoon, I made a point of eating more junk food and hopefully that helps me to gain some weight!

After my mom and Nancy left, I was just thinking about Thursday. Did some minor household tasks, watched De Zevensprong (my favorite children’s book by Tonke Dragt of which they made a tv serie).

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News from my nurse


This past week I was feeling very tired and slept a lot. I was also very shocked about the news that a very dear friend suddenly has cancer – she recently married her longtime partner and is also pregnant. She underwent major surgery to remove a tumor in the colon; the operation succeeded but we all are still very shocked by the sudden news of cancer and are praying for her health.

My nurse Janny called Victor to tell us the CT scan is scheduled on the 11th of september (I still shudder at the date). The appointment with my oncologist will be rescheduled from the 3rd of september to the 13th, because the results till now are very positive, with the bilirubin lower than they expected. They were pleased that the results are good, better than they had expected.

The chemo on Wednesday can continue, again first of three.

And tomorrow my dad will arrive from Malaysia! I’m very happy to see him. Thanks everyone for being so supportive!

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Update


Dear friends and family,

Thanks again for visiting me, thinking of me, praying for me, and sending me mail, comments and note cards.

My dad is coming to visit next week for my birthday, thanks to my sister Nancy who has arranged it all. He has not been to the Netherlands since our wedding, 7 years ago. It will be good to see him, although I will greatly miss Deloris who cannot come.

The chemo today was cancelled due to my low white blood cell count. Next week, we’ll continue with the double dose (AC together). The nurse had good news too: the billirubine has declined to 24, from 39 the last time (the first 3 week period). So the chemo is working!

Last Thursday I went to Amsterdam to see Nancy and Natascha and Neeraj met us there. Later Elly, Noreen and her husband Andrew came by as well. They’re so kind and caring! After they left, Nancy and I had a thai meal at the Thai company. Nice to be together!

On Friday Sanneke came, and it was really good to see her. She had brought me the most beautiful flowers, all colors of the rainbow. Unfortunately I had to go to the hospital because of my skin rash so we had a short visit/ My mom drove me to the hospital twice, once to pick up a form and make the appointment and next to see the dermatologist . It turned out to be eczeem (eczema).

This weekend was very very hot. Went for a run with Claudia on Saturday and wrote a bit on Sunday.

On Monday I was invited to go sailing with Erwin, Ingrid’s partner. He has a catamaran in Muiderzand. It was a beautiful afternoon and I really enjoyed it, especially our talk about Buddha.

On Tuesday my aunt and uncle came all the way from Wemeldinge Zeeland to Eemnes to see me. They’re very special people, and I really enjoyed seeing them again.

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Dentist and oncologist on August 7th, 2012


The first thing I noticed today is that I’m losing my hair, in a very fast pace. A single stroke through my hair and my hand is filled with hair. So much for the cold cap.

During the weekend, my gums were sensitive and I was worried one of my molars might be infected. So monday I called the dentist but the office was closed. I then called two other dentists and they were on vacation as well. Fortunately, the fourth dentist I called was willing to see me the next morning. So yesterday, while the rain was pouring from the sky, we went to Landgoed Zonnestraal where the clinic is located. We were very kindly received and I had explained that I have chemo. The dentist was very kind and very relaxed, he explained about his practice and I had a very good feeling right away. He checked my teeth very carefully, took three pictures and showed them to me. He couldn’t find any problems, everything looked ok. Apart from a dental cleaning I was fine! I was very relieved and concluded that the problem was probably from using a regular toothbrush (which the brochure about chemo had suggested). The dentist said I could just use my regular electric toothbrush.

So far so good. Next we had some  coffee and tea and went on to the hospital for the meeting with the oncologist. We barely made it there on time, but had to wait for a while so nobody minded.

The oncologist explained to Victor what he had told me last time. The basic problem is that the liver must be treated first because if it stops working, there’s nothing that can be done. The only treatment is chemo and the liver must also work to filter the chemo out of the body. This is why the doctors decided to give me a lower dosage every week, instead of one per three weeks. Then he shared the blood results. They are hopeful, he said. When you started, the key value bilirubin was 50, and it’s now at 40. The tumor protein level had stabilized. If this keeps up, there’s a good chance my liver can function nearly normally again.

He also explained that there are many intrahepatic ducts which transport bile to the gallbladder. Because there are so many tumors in my liver (hundreds), a single tumor can block a duct and stop the bile from leaving the liver. The chemo can help to reduce the tumors and they only need to shrink a little to allow the ducts to transport the fluid out of the liver. Promising news. In three weeks time we’ll see the oncologist again and I hope the   results will stay this good.

We enjoyed a nice dinner with friends that evening and I had a good nights sleep.

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Haircut and update


Yesterday my sister arranged an appointment for me at my hairdressers, Haute Coiffure Gebert. Very good hairdresser, at least something to look forward to. I had decided to cut my hair short, since it is easier with the cold cap and easier to style. The hospital flyer said to use only baby shampoo, but my hairdresser, who has experience with patients who lose their hair, nodded his head. “You know what baby shampoo is supposed to do, don’t you. To prevent it from hurting your baby’s eyes. It’s got a high pH and isn’t good for sensitive skin.” So that means I can use my own shampoo (volume!) – yes it does. Happy me. Two bottles of Zwitsal are available for young parents who need it! Send me a whatsapp if you want it (you have to collect it here in Eemnes)!

Nancy had paid for this treat as well, so when I walked home, I was carefree and my hair looked nice. Of course, how to keep it looking that way is the next challenge.

Victor shared an e-mail with me from our friend Marc Dufour, who lives in Canada and has metastates from colon cancer. He has done a lot of research (he is a gynocologist) and has found an alternative therapy which might be worthwhile for me if all else fails. See his message on the page Experiences.

This morning the oncology nurse called me. In the meeting my oncologist had yesterday with the specialists from Anthonie van Leeuwenhoek hospital (specialized in breast cancer) they discussed the chemo dosage and decided to lower the Adriamycine to 20mg per time, and deliver it weekly. She asked me to come in at 10.15 because it was still being prepared. Also, this means I have to come back next week and the week after. They were worried the liver would stop functioning altogether and that’s why the dosage has been lowered.

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