This last week

This past week – the last one of 2012 – was an enervating one for me. We celebrated Christmas with the kids – all four of them. Sebastian traveled to us from Groningen, and looked very smart in his new grey suit. He’s quite the man now, working at the ING call centre and doing a great job! Kudos to Sebas! Henriette is working at the Etos in Utrecht, a very nice drug store, where she sometimes acts as assistant manager. She also babysits. And she is following an orientation course for an art academy each Wednesday evening in Rotterdam. Valentine is now a junior in high school (VWO) and wants to go to the military academy to follow the officer’s training. He works at the Plus in Utrecht. Barbara is now 15 and a sophomore in high school (also VWO), she is looking for a job and also still has singing ambitions!

We exchanged presents on Christmas eve, and had a great time. I was particularly happy with the presents from Barbara (a beautiful clay candle holder she made herself and glazed light green), Sebas (a very nice bottle of the best Italian wine, to share with Victor!), Henriette (Weleda beauty products made from rose buds and iris) and Valentine gave me a Burberry gift set with eau de toilette and bath gel. Victor gave me a beautiful wooden jewelry box. They were all very thoughtful. We had taco’s for dinner.

The next day I went to see Nancy and my mom in Amsterdam. As usual Nancy had lots of presents for me, the heaviest one being the beautiful MacBook Pro which I’m now using to type this blog. I really don’t need it, but I have to say its a wonderful computer. Maybe it’ll help to get me over this writers angst I now seem to have. I hope to be able to surprise her like that for her upcoming birthday.

When I came back, Victor was leisurely preparing Christmas dinner, but not fast enough for the four hungry young adults! So we added a soup and salad course and everyone was happy. After dinner, Henriette visited her friend Amanda who was babysitting her niece, nearby. The next day was spent watching films and playing Mah-jong and I took Amanda and Henriette back to Utrecht. Victor dropped Sebastian off at the train station and we were back to four. Thursday night Annet treated us to a lovely five course dinner at De Goede Gooier, a nearby restaurant with a quiet ambiance. They had prepared wonderful vegetarian dishes for me, using wild mushrooms, eggplant and spinach.Valentine had to go back to work on Friday so he left with Annet and Henriette.

Friday was the big day for me. We went to the hospital for my meeting with the dentist and my oncologist. The dentist was very nice, and told me anytime I had any side effects I could come to see her. Dr. Baars, my oncologist, was pleased that I looked better. My hair is growing, albeit slowly and its very short, and my eyelashes and eyebrows have grown back. Also, I’ve gained weight and my muscles are back as well. All in all, I look much like I did before I got sick.

The results from the MRI showed that the breast tumor has shrunk from 2,7 cm to 2,4 and the shape has changed: it is now caved in around the perimeter, much as if it is imploding, whereas it was round before. There is not much to see now in the armpit lymph nodes. The CT scans of the liver were not very clear. This is partly because the mitomycine caused scar tissue to grow which is hard to distinguish from the cancer tissue. Also the cancer tissue has become somewhat vague on the scans. Dr. Baars primarily looks at the blood values which were improved even compared to last time. The two tumor markers are almost normal. I’m not really sure what that means, but it sounds good.

She explained about the new pill cure which I am to follow starting on Monday. I will take capecitabine, a chemo which comes in 500 mg tablets, 3 after breakfast and 3 at night, after dinner. Two weeks on and one week off. Victor picked them up this morning and I had my first dose. I am allowed to travel with the pills, so I’m planning to go to LA to visit Nancy and then up to San Francisco in February to visit my friends there. Annet is taking Henriette to LA at the same time, so hopefully the timing will work out so we can meet up there.

Yesterday we had tea with Marijke, Peter, Marlies, Dani, Carlijn (back from Canada) and our neighbors Nicoline, Kees and Rob. Peter and Marlies had a kidney operation a week and a half ago; Peter is Marlies’ father and donated one of his kidneys so that she can live a semi-normal life again (she’ll be on medication the rest of her life). Her kidneys worked at 18%, and she would have had to go through dialysis if this operation had not taken place or had failed. They are both recovering now, and can walk already! We’re so relieved it went well!

Today we’re taking things easy. Went for a walk in the woods with Ellen, Nancy, Puk and Flo and had some juice at Nijhof/La Place. Now I’m home with Victor, listening /watching Keith Jarrett (Standards) on dvd with a fire burning.

My new years resolution: to take things easy, to enjoy every day and to keep in touch! And of course to try to get better! Much love to all of you. I wish all of you a very happy and joyous new year!

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:


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.


Second opinion – continued

Yesterday – Monday October 29th – we had our second meeting with dr. Westgeest. He gave us his (and his team’s) opinion on my situation. He began by explaining that had I come to the VU for treatment after the first diagnosis, they would have started me on a taxane based treatment (like Taxol). But there are more ways to treat this disease. Unfortunately, when I was diagnosed, it was already far advanced and metastasized in the liver. The treatment AVL is giving me, directly to the liver may offer additional time if it works. Dr. Westgeest advised us to stick to this treatment and await the results. He confirmed that we’re in good hands at the AVL, which is a renowned cancer institute with the top specialists. He saw no need for additional checks later on. If at any time we’re not sure, we should ask dr. Baars, who can explain things to us. For now, we are reassured that this is the best course of action. We thanked him for his time and good explanations and left the VU. I felt reassured by his advice and am convinced the treatment I’m getting at the AVL is the best possible at this moment. Now we have to wait for the 14th and see if it has the desired effect.


48 hours and counting

Thanks Victor for updating the blog while I was ill. Victor brought me my iPad this morning so now I can write about the last 48 hours.

I’m in a room with a view of trees and grass. My bed is close to the window.

There are three other patients in the room, all with cancer. The two ladies are terminal and will move to a hospice. One just turned 50 and is quite fit, but the cancer has spread to her brain. The other is a small woman who is very quiet and can’t leave her bed. The gentleman across the way is leaving tomorrow. I’m not sure what he has but he will go to the AVL cancer hospital for radiation.

When I came I was extremely cold, cold shivers. An hour later my temperature was 39.9. I got into bed right away and got warm blankets. A nurse took blood for the tests which they do when you have fever.

The doctor was very kind and explained they would put me on two antibiotics, one for the the throat and one general type. They placed the IV needle and started me right away. Victor left to get me all the things I would need for the night.

The antibiotics are given at 10 and12 pm and the IV pump has an alarm that goes off when it’s done. I slept little that night. Thursday morning I woke with pain in my mouth. At 6 the new antibiotic is given. At 8 they come by with breakfast. Since I can’t swallow, I’m given a nutridrink which has plenty of nutrients and calories. It still is hard to swallow and it takes me all morning to finish one bottle of 200 ml. What helps is ice, a waterbased icecream. I had visitors, my friend G came by at 10.30 but since it was outside of visiting hours her visit was cut short. My mom came in the afternoon and Victor came at 18.30, Ingrid came at 7. I still have trouble talking.

At night again trouble sleeping. I can fall asleep but wake up easily due to the IV alarm, noises around me etc. In the morning I woke up with a swollen mouth.

Today was a trying day. The morning was alright. The nurse helped me and asked the doctor to look at my mouth. I have oral mucositis which is common among chemo patients. It is something that heals on its own but is very painful. I drank two nutridrinks and ate a pudding desert.  I did manage to go outside around noon with Mariette my roommate who wanted a smoke. It was nice to get some fresh air.

The doctor came by with the specialist internal medicine and she prescribed painkillers. Victor was worried about my treatment and came to speak to the doctor. He confirmed what we know which is that it takes time to heal from the condition I have, since my resistance is terribly low.

Unfortunately for me I reacted very badly to the painkiller medicine. I started to vomit uncontrollably, but since there’s no food in my stomach I vomited slime with some mouth lining. It left me pretty shaken. The nurse gave me anti-vomiting medicine through my IV and that helped. I’m now on paracetamol (acetominaphen) which is fine. It doesn’t relieve all the pain but it makes it a bit easier to swallow. I sometimes cough suddenly when there is saliva stuck in my throat. I have a lot of saliva but it hurts to swallow it so I spit it out a lot.

Now I’m feeling a little better. I guess I have to be very patient and resign myself to the fact that I’m stuck on liquid food for the next few days.

Chemo #4

So turns out the numbering I used is a bit different from the hospital. I’ve had 3 chemo’s, spread out over 9 weeks, which they number 1a, 1b, 1c, 2a, 2b, 2c and 3a, 3b, 3c.

So yesterday I had number 4, all at once. The Adriamycine (Doxorubicine) which I first got in packets of 20 ml was now increased to 94 ml. Which funnily enough took the same time, about 15 minutes. I felt a slight tingling in my nose and watery eyes but otherwise I felt fine. The Cyclofosfamide (Endoxan) was the same as before so hadn’t changed. This saves me from having to get my veins pierced every week, which makes them harder for the nurses to put the IV in and to take blood. I don’t have to get my blood checked until october 8th, so that’s a relief and a big time saver!

So far so good. My mom and Nancy had taken me to the hospital yesterday, and despite being the last one to get the IV, I was the first to leave. This time, I had only male companions, one of them I saw three weeks earlier with his wife, who is very kind. No one wanted to sit on the bed, so I volunteered. It doesn’t matter much to me, I get to take my boots off and you can move the back up so it’s quite comfortable. I have a feeling the reason men don’t like the bed is because they’re afraid to take their shoes off (although you’re allowed to keep them on). My mom bought me Marion Zimmer Bradley‘s novel The Mists of Avalon, which I read more than 20 years ago. And although I’ve watched the movie many times, it is still a delight to read.

Although they serve lunch, I had brought my own sandwiches with vegetarian filet americain (yes its good, and contains lots of protein) and a banana. Still, afterwards we ate lunch and shared a big mozzarella sandwich and I finished a large smoothie. All in all I’m doing my best to keep eating healthy and calorie-rich.

I’ve decided to start creating clay scultpures again. Apart from this past year,  I had been attending sculpture classes in Laren (next town, 3 km from our house). They were fun to attend, but the time was rather late: from 7.30 to 11 pm every wednesday. I asked my teacher if I could bring the sculptures in to get them fired and that was no problem. So my mom and Nancy drove me to the store (de Hazelaar in Soest) and I selected a 10 kg block of clay (grove chamotte) and some tools. So hopefully I’ll find the inspiration to make something beautiful!

Nancy likes this group of elephants I made two years ago, its fired in clay but we’re considering making a mall and having it cast in bronze :






So although I feel okay today, I expect that I’ll feel worse tomorrow and Saturday but we’ll have to wait and see! Thanks again for all your thoughts and best wishes. Take care!

Fever’s gone!

This past friday the hospital called Victor to tell us that they found an infection in my urine. It is an urinary tract infection, and Victor picked up the medication right away. I haven’t had a fever since Saturday, so the antibiotics seem to be working.

Today I felt much better and I haven’t had to take an afternoon nap for two days. I feel like I have energy again! Still, I will try to conserve my energy as much as possible and get as much rest as I can.

This morning Victor took me to the hospital to get my blood taken. I checked with the Radiology department if it was alright to do it today instead of tomorrow, since it will save me time, and it was no problem.

Tomorrow I have to drink a liter of water mixed with a vial with JOXITALAMINEZUUR an hour and a half before the scan. I cannot find the translation of this acid anywhere, but it is used as a contrast fluid for the CT scan. Last time I didn’t get this but some other fluid via an IV. Maybe they’ll give that to me as well.

I had three visitors today, so that kept my mind off the scan tomorrow. Wednesday is the last chemo of this 9-week period. And Thursday we’ll get the results. I’m very anxious (what Marc calls scanxiety – the nervousness of waiting for scan results). It really helps me to know all of you are wishing the best for me, praying for me and thinking of me. Thanks so much for all your support!

This week

Last week I had no chemo because my white bloodcell count was too low. For the first time, I had to slow down, and rest more.

On Tuesday, my dad arrived from Malaysia. My sister was already at Schiphol when we arrived, just in time to meet him.

Deva, Nancy en Sheila Ghosh

I was surprised with 5 beautiful bouquets! There is someone who sent me flowers without a name; the card mentioned ‘carpe diem’. If someone recognizes this, please tell me so I can thank you!

Tuesday evening we celebrated my birthday with an Indian meal and I was showered with beautiful presents from my mom, sister, dad and Victor.

The chemo on Wednesday went fine. My friend G picked me up from the hospital and took me to the Golden Tulip where we had lunch with my mom and sister.

On thursday we went out on the lake in an electric boat.



My dad is now staying with Nancy in Amsterdam, he’s leaving Wednesday.

Thursday evening I had a fever and we called the hospital. They told us to come by the emergency room. Apart from the high temperature (38.9) I felt alright and the tests showed there were no infections or other issues to worry about. The doctor also checked me and said I could go home.

Today again a fever, close to 40 degrees. I don’t feel sick, not feverish. It must be the chemo working. So I think I will need to take a lot of rest the next few days and try to give my body some time to get better.

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!

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.

Treatment #3 August 1st 2012

Yes, summertime is still here. Here’s me outside the hospital with my mom.

At the hospital, there’s a nice waiting area with magazines and a volunteer brings coffee or tea. Just past 11 three of us were taken to a room with green chairs, and again the lovely view outside. A young woman was already there with a friend, she looked younger than me.

The nurse accidentally cut her foot while moving a chair and yelled out and jumped up. She was bleeding but fortunately enough she had plenty of bandages. Her vacation starts tomorrow and although she was very nice and alert, she would occassionally say she was very much looking forward to the pool at her vacation spot. Sure sounds good to me!

It all took much longer today since she had to take care of all three of us at the same time. The good news was that she got the cap on in no time – we stuffed two washcloths in the sides, I held on to the green snakey hat (made up of green coils through which the freezing liquid streams) while she pulled the yellow helmet over the top. She strapped it on, put my ski band across and that was that. Took no more than 4 minutes.

So then I have to wait 45 minutes till the scalp is cold enough. It took a while before I got the first IV (with salt solution). Ofcourse when the chemo should have been added they were all out to lunch. A young nurse came in, attached it, and waited for ten minutes. She explained when another lady asked that because the chemo I have is rather aggressive, they have to wait in case something happens.

Like last time, this only took about 25 minutes. The cap then has to warm up because if you take it off, my hair would be frozen en stuck to the side and that would pull it out anyway. At that moment, Trees came in. She and her husband are friends of our friends and neighbors Marijke and Peter. Trees was in good spirits. They’re going away on a short holiday and she had two-three hours of chemo today.

The other ladies in the room explained they all had side effects, one lady really had a bad time. I feel so lucky that I’m not yet feeling bad. On the contrary, apart from insomnia (for which I get pills to help me fall asleep) and eyes that burn occasionally I feel nothing at all, no nausea, no pain, no vomiting.

Here are some pictures of us in the park (Groeneveld) afterwards:


Because I don’t want to spam too much, I haven’t blogged as much as maybe I should have.

Here’s a picture of my cousin Ineke and her son Luc, me, Naut (standing) and Valentijn (on the right) last monday (July 23rd), taken by Nancy:

Yesterday I met Ingrid and Carien at the teahouse ‘t Hoge Erf in Lage Vuursche and we had apple pie and coffee, tea and hot chocolate (me!). With whipped cream. Carien came in with her finger bandaged. And she had just returned from vacation in Spain with 8! teenagers. So we asked what had happened. Well, she said reluctantly, her finger was caught in the door and the top cut off. So she pulled it out of the door and put it back on her finger. Fortunately, one of the kids had a drivers license and took her to the hospital. What a horrible story! I can’t deal with things like that, this really freaked me out. To top it off, the surgeon at the hospital wouldn’t tell her if he had sewed it back on and she couldn’t see because it was bandaged again.

It turns out he did save it. What a vacation!


We’re going to the Ardennen on Friday with Barbara and Valentijn and staying till Sunday. We’re staying at La Passarelle near Durbuy and our good friends Michael and Teresa from San Diego (Teresa and I worked together at HP from 1995-1998) are driving up from France. I’m really looking forward to it. Ciao!

Photo credit: Nancy Ghosh!!! Thanks Nanc!