Category: Chemo

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Feeling good!


First of all my apologies for not posting sooner. I’m doing really well, feeling really great, and so didn’t think much about the blog, to tell you the truth. I’ve been eating a lot, it seems I’m hungry every two hours. This means I’m putting on weight, I weigh 51,5 kg now, so that’s fine, but my tummy is back and my pants fit snugly. My eyebrows and eyelashes are back and my hair is growing back very slowly.

Last week on Thursday I went to the Marienwaerdt Christmas fair with my mom, it was great fun. All the farm buildings on the estate were covered with snow and inside a few buildings, big log fires were burning. We had snow last week, but now it’s all gone. At home we burn wood fires every night, and light candles and incense. It’s all very cosy.

Last week I was busy getting our address book (well, excel sheet) up to date. I’m sure I don’t have everyone’s address, so if you’d like me to send you a card send me your snail mail address (sheilavangeusau at gmail dot com).

For those who are wondering what my days are like, usually on Monday morning I clean some part of the house and do the laundry. Monday is also a day when friends stop by. On Monday afternoons I help Khadija (who used to clean our house but stopped because she is 8 months pregnant) with her Dutch language home work. She has to take an exam to prove she can speak and write Dutch, but it’s actually quite difficult. So far we’ve done a chapter on birthdays, on insurance policies (aansprakelijkheidsverzekeringen) and on separating garbage. I like helping her. I’m also working on painting the woodwork in the house, starting with the attic. When it’s done I’ll post a picture. I walk Flo, our dog, once or twice a day. Other than that I read a lot, surf the internet, chat with friends and family via Whatsapp and sometimes I cook.

Victor is now preparing for his new academic adventure: a masters in tax law (fiscaal recht) which he will start in February at the University of Amsterdam. Because he already has a law degree, he has been accepted into the program. In about a year he will be able to start as a legal tax advisor. So if any of you are interested in having your taxes done let us know!

Some of you have asked me how I am doing emotionally. I haven’t always been very open about that on the blog, mostly because I don’t want to scare anyone and writing things down makes them stick, even if it is a feeling that passes quickly. It’s been quite an emotional roller coaster ride for me but also for Victor. It started when I had the first meeting with the oncologist at Tergooi and the first thing he told me was that he had bad news and I would not be able to get better. I later read that this happens in one case out of 20: that metastates are present at the first diagnosis of breast cancer.  I am not afraid to die, I have no fear and I don’t feel the need ‘to finish something’. But what makes me sad is the terrible impact it has on Victor and everyone who loves me.

When we saw my oncologist again in the second week of October, he had bad news again: the cancer in liver was increasing. This time it really shook me, and both Victor and I cried. I was afraid I wouldn’t make it to Christmas. And now I’m feeling really good, above all expectations. What was very hard for me was to accept that I couldn’t plan ahead. But I have accepted it. At the same time, I’ve decided that as long as I feel good I better make the most of life. So I’m making plans for a week, a month, and three months.

Since I am feeling normal again, I was thinking I would like to start working again (part time), but I wonder if I have enough energy to keep it up. It all depends on the results of the scans and the new medicine, which I will start end of December. Any suggestions are welcome!  I’m also considering pursuing a law degree myself at Erasmus University of Rotterdam. They have two programs that could be interesting: the Bachelor of Law and the Bachelor of Tax law (so I can help Victor). I completed the first year of the law degree at the University of Utrecht in 2003-2005, so I would be able to skip the first year. The idea of studying is a way of looking ahead. Even if I can’t finish it, it’s a prolongation of life. On the other hand, sometimes I think I should focus on my creative side, which I keep putting off.

Here are some pictures of us from last night:

sheila, victor & flo

Valentijn & Barbara

We are all really looking forward to Christmas, and we wish you a wonderful holiday season!

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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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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!

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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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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!

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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.

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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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Treatment #5 – August 15th


Thanks all for all your e-mails, prayers, cards, flowers and visits! They really help me!

Today the treatment was very quick. The appointment was scheduled at 8.30 but when we arrived they had booked me at 11. But it was no problem, I could get the chemo right away. The nurse explained that the first day of the three weeks I will be planned in at 8.30 AM, and the two short ones will be at 11. Wish they had explained this right away, much easier to remember.

Sinds I don’t have the cold cap anymore, I’m done within the hour with the short cure. Nice!

Victor’s been sweet enough to lend me his Macbook Pro, and now I can see my complete email accounts, including a message from Anna which Mail marked as an ad. She has tried so many times to call me, I finally managed to call back. We had a great talk, since she’s had breast cancer she could tell me all about it.

I received a very sweet email from Marianne, who has been diagnosed with ovarian metastases. She has a blog too, but what a difficult time she’s had and still she is such a shining personality, bright and positive.

Today I purchased a wig. Well, I haven’t paid for it yet, since it will be billed to the health insurance and then they will send me a bill. I have no idea what it costs, but it doesn’t matter. I decided to go for a very different look: kind of a glam look.

So please tell me what you think, even if you think it looks terrible, or is way off!

Anyway, I’m happy with it! And one great thing about a wig: your hair is always perfect, never a bad hairday. Thanks to Raymonda van Haar in Balans!

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Tranen – Tears


Dear all – didn’t realize I wrote this post and the next in dutch. I will translate it tomorrow. Tears refers to my tired eyes, no crying yet so no worries! Take care.

—English—

Last week my macbook pro from 2008 crashed. It’s completely dead. No lights, no sounds, just dead. For days I read my mail on my iPhone, but now I’m writing this on the iPad.

Last week I experienced some side effects from the chemo. A dry, sensitive mouth, with a sore throat. But especially burning and teary eyes.

As I’m typing this, my eyes hurt again. Looking at a computer screen or watching tv is difficult.

Last week I read the book “the woman in the cage”  (thanks to Marijke for lending it to me) and this week Mr. Rosenblum’s list. The first one was very sinister and a real thriller. The second book was one of my goodbye presents from my Unisys colleagues.  I found it  a delight to read, about the determination of a man who believes in his dream, despite all the misfortune he encounters, and the emotional life of his wife who loses herself in her memories of her loved ones but who finds a way to reconnect with her husband and their life together through cooking her families recipes. So lots of tears this week!

—Dutch——

Vorige week is mijn macbook pro uit 2008 gecrashed. Hij doet helemaal niets meer. Geen zuchtje,geen lampje, gewoon helemaal dood. Dagen lang heb ik mijn email op mijn telefoon gelezen, maar inmiddels schrijf ik dit bericht op de iPad.

De afgelopen week heb ik last gehad van de chemo. Een droge, gevoelige mond, mondblaasjes, af en toe een pijnlijke keel. Maar vooral hele branderige en tranende ogen.

Terwijl ik dit typ beginnen mijn ogen weer pijn te doen. Op een scherm kijken, of tv kijken lukt niet zo goed. Na tien minuten moet ik echt iets anders doen.

Vorige week het boek de vrouw in de kooi uitgelezen (dank Marijke voor het lenen), en deze week de lijst van meneer Rosenblum. De eerste was bijzonder spannend maar ook heel griezelig. De tweede heb ik van mijn Unisys collega’s gekregen en vond ik echt een prachtig boek, over de volharding van een man die in zijn droom gelooft, en het emotionele leven van zijn vrouw die zich verliest in haar herinneringen en zich al kokende weer de liefde voor haar man en hun nieuwe leven hervindt. Dus veel tranen deze week!

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