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!

Viore


–English —

Yesterday Victor and I stopped by Viore. Carien had tipped  me weeks ago and the hospital had given me a beautiful card with the information. Viore is a walk-in center for people with cancer. It is located near the hospital, hidden between the trees and a small parking lot. It was difficult to find at first.

Once inside, we were kindly greeted by two hostesses who offered us something to drink (tea for me, water for Victor). I could tell my story and they explained about the activities they offer – from art to yoga to sport guidance – and gave us a tour. It had been a lab but with the help from many volunteers and sponsors, it has been transformed into a homey environment with different rooms, a living space with a kitchen, a yoga room (decorated with a seascape and beach look), a small fitness room and even a beauty parlor. What else could one wish for?

Today I returned for the sport guidance session. A very experienced physical therapist explains how to use the different machines and monitors your progress. Since running with Flo isn’t working out too well (she usually isn’t in the mood), this seems like an excellent way to stay fit. And so it is. Two experienced and powerful ladies (A & L) were already working out (both have cancer, L is cured and coaches others, A had bad news like me but is super positive). They’re very trained. But when I had to work out on the apparatus (the kind you see in gyms with the bars and rolls) I couldn’t even lift 5 kg with my arms. The only excuse I have is that I never exercise my arms but now I will need to start. With Ineke’s help, I will try to work out at Viore every Tuesday. Fortunately I could get by on the bike, rowing machine and treadmill (running).

Afterwards we drank some tea and talked and then the rain came pouring down. L had come by bike from Blaricum and went back home via the rain. Very impressive. She told us about her experiences with a breast reconstruction gone bad. Very unpleasant, but she is very brave. And A as well. She has metastases in her head and stomach, after almost being cured. It must have been an awful disappointment, but she is very spirited. Fortunately for me I now have two very pleasant trainingspartner I can also laugh with. It’s a lovely place, Viore. Please let anyone know – it is open from 11 to 4 pm in the vacation period and then from 10 to 6 pm. Thanks Viore and all volunteers, hostesses and hosts! I’m very glad you’re there for me and others.

http://www.viore.org/

–Dutch—

Gisteren ben ik met Victor bij Viore binnengestapt. Carien had mij al weken geleden getipt en van het ziekenhuis had ik ook een mooie kaart van Viore gekregen. Viore is een inloopcentrum voor mensen met kanker. Het ligt op het terrein van het ziekenhuis, verscholen tussen de laatste bomen en een parkeerplaats. Eerst konden we het ook niet vinden.

Eenmaal binnen werden we zeer hartelijk en gastvrij ontvangen door de gastvrouwen. We werden verwend met een heerlijk kopje thee en water, ik kon mijn verhaal kwijt en we kregen een rondleiding. Het was eerst een laboratorium maar met hulp van vele vrijwilligers en sponsors is het omgetoverd tot een prachtige, huiselijke plek. Een mooie huiskamer met keuken, een yoga ruimte, een sportzaaltje en zelfs een beauty ruimte. Wat wil een mens nog meer?

Vandaag ben ik teruggeweest voor de inloop sport activiteit. Een zeer ervaren fysiotherapeute begeleidt wie dat wil op diverse apparaten. Sinds het hardlopen met Flo niet zo handig is (Flo heeft meestal geen zin) leek het mij een goede manier om fit te blijven. En dat is het ook. Twee ervaren sportieve dames stonden al klaar en waren volop aan het trainen. A en L zagen er super getrained uit. Maar toen ik uitleg kreeg op de krachtmachine kon ik nog geen 5 kg trekken met mijn armen. Enig excuus dat ik heb is dat ik echt nooit wat met mijn armen doe, maar daar gaat nu wat aan gebeuren. Met hulp van Ineke, de fysiotherapeute ga ik nu elke dinsdagmiddag aan de slag. Gelukkig kon ik toch goed meekomen op de loopband, fiets en roeimachine.

Na afloop lekker bijgekomen, en toen begonnen de stortregens. L was komen fietsen uit Blaricum en moest nu terug door de regen. Zij had een ongelofelijk verhaal over een mislukte borst reconstructie. Heel naar om mee te maken, maar zij is ongelofelijk dapper. En A ook. Zij heeft uitzaaiingen in hoofd en buik, nadat ze bijna genezen was. Heel erg om dat mee te maken. Gelukkig heb ik nu twee hele fijne trainingspartners waar je ook mee kan lachen. Een hele fijne plek, Viore. Laat het iedereen weten, open van 11-16 in de vakantie, en daarna van 10-18. Dank je wel Viore en alle vrijwilligers en sponsors! Ik ben er erg blij mee!

http://www.viore.org/

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!

Treatment #4 – August 8th, 2012


Today I had to start at 8.30. The two gentlemen (patients) who had been there the first time I came were already in the room.

I had a new nurse. She was cheerful and efficient. Unfortunately the needle wouldn’t go all the way through so another nurse came and slapped my hand a few times (makes the artery  stand out more) and put the needle in my hand. I felt that a good deal more than the wrist, so next time I’ll ask them to try the other arm. I told her I didn’t need the cold cap anymore.

Since my hair is leaving my head at an alarming pace, I’ve decided to shave it off today. Yes, dear friends and family, its a shame I couldn’t enjoy this hairstyle longer, but once my hair grows back, I will ask my hairdresser to cut it the same way.

Not doing the cold cap takes an hour and a half off the schedule, so this is much quicker. Before 11 we were done. Victor took me to Baarn where I bought some cotton underwear. I have a skin rash from the chemo and all the polyamide underwear I have isn’t comfortable anymore. To my surprise, there was a hat store in Baarn which was having a going out of business sale. The lady helped me very kindly and I bought a scarf and a wool hat.

So today I’m cutting my hair off and shaving it. Perhaps I’ll post a photo soon.

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.

Zutphen en Durbuy


Busy week this week. For starters, last Thursday Victor and I visited Zutphen. It was a lovely afternoon and we really enjoyed walking through the old village. It is one of the few cities in The Netherlands that seems like it hasn’t changed in the last 400 years. The only modern building we saw was City Hall, which looked oddly out of place. Sections of the old city wall are still standing. If you like old town, go visit Zutphen and Deventer is not too far away.

  

Friday we left for the Ardennen –  I had a bad sore throat and worried I might get sick. Fortunately the combination of fresh squeezed spinach/apple/cucumber juice, beet juice, a few paracetamol and Ricola from Annet I’m all healthy again! We arrived at our hotel near Durbuy a few minutes to three, and on the clock, Teresa and Michael arrived (we call them M&T now for short). It was so great to see them! I had seen them in San Diego last year, but for Victor it had been much longer ago, back in 2003 when Michael gave us the historic  tour of San Diego. They bought a French fiber glass canal boat last year, on which they travel all through France!

We walked around Durbuy which seems to exist purely for the tourists since we’ve never ever seen so many restaurants in one square km (probably even smaller – it is the self-proclaimed smallest city in the world!

We ate in the restaurant of the hotel. They serve good food in huge quantities. Unfortunately for me not much choice on the vegetarian side, so I settled on the pasta provencal (tomatoes and bell peppers). It could have fed a family of 6.

The hotel was very nice, the staff friendly, but there was only one problem for me: I couldn’t sleep in the bed because of pain in my back. I ended up sleeping in the bedbunk and that was fine. But I think I will adapt my bucket list and make shorter trips so I can sleep in my own bed.

The next day we visited the caves of Remouchamps. They were really impressive. We walked quite a long way, saw beautiful stalactites and stalagmites, a large caverns (had to climb quite a bit) and finally took a boat on the underground river. Really beautiful!

In the afternoon I was tired and took a nap while Valentine went kayaking. In the evening we went to the Indian castle Radhadesh, a spiritual center for the Hare Krishna’s in a typically French 18th century castle. Mostly white women and men wearing sari’s and indian dress. We were too late for the tour which Barbara had really looked forward to but not for the food! We had a delicious vegetarian Indian meal (Valentine had pizza) so I was really happy. It was a very spiritual place. When Victor paid with his debit card, the line was busy (they shared it with the store) and the German lady ‘cursed’ “Krishna”. Victor bought me a yoga book for 1 euro from which I learned that yoga is all about becoming one with Krishna which one achieves by saying his name continually. I’ll have to remember that!

The next day we visited the topiary park, which had hundreds of different figures cut by hand from boxwood (buxus). I love gardens but this one left me somewhat indifferent. I enjoyed my conversation with Michael though, he knows so much about so many different things and can really get very enthusiastic. Very inspiring! Victor discovered they have a Belladonna plant there with berries, which are poisonous in small quantities and can kill a child. We walked through the town and then it started to rain. We said our goodbyes to M&T in the rain and headed back to Holland. A nice weekend!

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!

 

 

Treatment #2 – July 25th 2012


What a beautiful day! Wonderful to be in the sun, each day this week has been such a blessing. I love the sun and had been missing it the past few weeks. But this week has more than made up for that.

Nancy came to the hospital with me at 11 am. The nurse came to get me right away, she is very nice and its a very pleasant place. The room has four chairs, today a nice lady across from me lay in a bed. The full length of the room has large windows which offer a beautiful view of the garden, grass and trees.

I had the same chair as last time and again the nurses struggled with the cap. It seems I have a very small and oddly shaped head. But it’s worth it because the cold treatment has so far worked to keep my hair on my head. Like they say, you have to suffer to be beautiful. I never quite saw it that way before. And the suffering isn’t so bad. My ear was a bit crushed but otherwise I coped quite well I daresay! Fortunately it was a warm day, it must be much worse to have your scalp frozen when it is freezing outside.

I read a Ville d’arte magazine which was full of wellness and wellbeing articles. Several were about detoxing using fresh veggie juices. Nancy and my mom have been juicing all week for me. My favorite is the beet juice, but the first time I peed after I drank it I thought all the chemo had instantly left my body (its nearly the same red color). Good thing I remember I drank a bottle of the red juice just a few hours before. Now it turns out raw pumpkin juice is very good for your liver. I have a whole stash, also spinach and broccoli. They’re surprisingly tasty, almost addictive!

The chemo was done in half an hour, the cap needed to stay in place another half hour but at 12.30 we were done. I had accidentally taken my pills for schema 3 (whatever that means) but it turned out I only needed those for the first cure. Since this one is so light, I don’t need any medicine at all. Just in case, I have pills for nausea but since I can eat whatever I want without even a moment of regret I feel very lucky. Next week I’ll be back!

Victor and I made a bucket list – inspired by the movie starring Jack Nicholson and Morgan Freeman. A great movie to watch if you haven’t seen it yet. It showed me that there’s much to be enjoyed in sharing something together. When I was working there never seemed to be enough time. And now I intend to enjoy every minute of every day with the people I love the most. Here’s my bucket list:

1. cycling in the sun
2. sailing on the lake (loosdrecht) nearby in the sun
3. having a drink outside in the sun)
4. weekend Madeira (flower island)
5. long weekend Barcelona/Girona
6. citytrip Hamburg
7. Marienwaerdt 15 augustus (castle fair in Holland)
8. citytrip Lissabon
9. San Francisco (next year)
10. Peak district UK
11. Danor review (book I wrote long ago that I’d like to publish, so if you have any tips, let me know)
12. vegetarian cooking
Much to look forward to! Take care all!

Treatment #1 – July 18th, 2012


Dear friends and family,

To start off: my first day of chemo is done and I feel absolutely fine! No nausea, no constipation. Happy me! I hope it stays this way. Thanks for all the lovely flowers, the house is filled to the brim. I feel very loved by all of you!

This morning the appointment was rescheduled for 10.30-11. We arrived early and waited at a table till someone came. Of course the promised volunteer was no where to be seen. So I went to the nurses’ station and someone approached me right away. Of course I went back to bring Victor along. The room was pleasant. There were three men receiving chemo but they were very nice and quiet. One man’s wife was there as well so Victor could stay.

I sat in a blue chair, like a dentist’s chair or a business class seat it could be placed in all positions. Very comfy. I selected some magazines, had my water bottle ready and was ready to go.

The nurse, Liesbeth, helped me. Also Jannie, who had seen me on Monday, came by to explain the new medicine schedule. Liesbeth wrote it down. Thanks to the lower dosage I can use fewer medicines.

Next, the cold cap was selected. This is a plastic cap with tubes which are cooled to -6 degrees centigrade to cool the hair folicles. This is to prevent hair loss. Well, the small cap was too small so that it would leave a round bald spot in the middle – not a nice look. The next one was too big, but there was no other choice. The ladies put on a cover and tightened it but still there was too much space. So they stuffed it with bandages and napkins and then pulled on the straps together. It was a very funny sight! They tightened the strap around my chin so tight that it nearly crushed my chin. So I asked them to loosen it, which they did, somewhat unwillingly.

See the result for yourself and have a good laugh!

The man across the aisle called me Motor Mouse. I guess I kinda look like one.

Well, the cold cap wasn’t so bad. Except when they brought lunch – I had one slice of bread with cheese which I cut into tiny little pieces because I couldn’t open my mouth wide enough. No big deal though! It surprises me that the hospital doesn’t have healthier food. No vegetarian soup, no greens.

The chemo was fine. I read two magazines which had lots of pictures of beautiful seaside resorts with sun! Why can’t we have sun here? Each day that starts out sunny ends up rainy or cloudy. After two and a half hours, I was free to go. Very bearable. Next week I will need to have my blood checked on Monday and back on Wednesday for the next section. This way it’ll be no problem.

Afterwards, Victor dropped me off at Landgoed Groeneveld (a castle and park in the woods between the hospital and our house) where Nancy, Ellen (my mom) and Barbara were walking with 3 dogs: Puk, Pippa (also from Amsterdam,Puk’s girlfriend) and Flo. We went to the organic store with produce from the farm. Its a great store called Hoeve Ravenstein, for anyone interested, located in Landgoed Groeneveld in Baarn.

We had lunch at home – veggie hotdogs. Fortunately I feel fine. Let’s hope it stays this way. Take care all!

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.