California sun!

After working on the Grammy’s with Nancy for two days, we had some time off yesterday and today! Today is beautiful weather, warm and sunny, 20 degrees C. Here I am in the sun outside the coffee bean.

So the Grammy’s were quite an experience. We started around 9.30 on Saturday and Nancy’s job was to manage the artists doing the Tributes, so the combinations including Elton John, Mumford & sons, Mavis Staples and Brittany Howard. Also Sting, Bruno Mars, Rihanna and the Marley Brothers. There was also the finale with LL cool J, Chuck D, Z-trip, Tom Morello and Travis Barker. Nancy had arranged a hotel room on Saturday night which was great because I was pretty tired by 6 pm. She worked till 9 and we had a bite to eat at Wolfgang Puck.

Sunday was the big show day. in the morning everyone had to be on time for the big rehearsal. Because it is a live show, the timing is crucial. At one point on Sunday Elton wanted to talk to Tom Morello so I took Elton’s manager to Tom’s dressing room which was in the Nokia building. We had to take a long underground tunnel to get there and took Tom back to Elton’s dressing room. I mostly helped Nancy by keeping track of which stars entered the Staples building on Sunday. I saw Chick Corea and Stanley Clarke. Also Mr X (Jay-Z) and Nancy saw JLo on the red carpet.
During the show, there are many artists and presenters who all need to be ready at the right place and time. Johnny Depp was a presenter and he was late. Nancy saved the show by getting him to the stage on time, by taking a golf cart down the ramp.
We also helped Mavis Staples who was a lovely older lady who had some trouble walking. It was fun to see Nancy’s colleagues Patty, Vanessa, Chantel, Jacky, Dana and many more who all were really sweet.
We must have walked many miles those two days so I feel that sitting here in the sun is a well deserved break for both of us! Some of my friends on the East Coast have just had a blizzard and snow storm, power outages and freezing cold! I’m thinking of you and hope spring will come soon!

I’ll keep you posted!

Scans and echo

Today we went to the AVL cancer hospital for the scans. We left a little late because we had to make a stop at the chamber of commerce first. I had three companies and decided to stop two, since I’m not working now. This past week we’ve been busy with the administration, which has mostly been done for us by Sheira from Administration4You. She’s done a terrific job and kept the hassle to the bare minimum.

I had the CT scan first, which was quick. I dressed for the occasion (no metals, just soft and stretchy clothes) which makes it all easier, no need to get undressed. First they tried to insert the IV (for the contrast fluid) in my right arm, but no blood appeared despite the nurse’s attempts to wheedle it out of me. The left arm worked better. (Same was the case later for the blood tests, so I had my share of needles being moved around inside my veins, not so nice!)

The CT scan was done in less than 10 minutes, and the MRI was scheduled an hour later. I spent the time reading the Grazia, nice change from my more serious reading at home. The MRI went well but took much longer. Because of the noise I was given earplugs and headphones, connected to the radio. After the scan, they removed the IV.

Next I had an echo. The radiologist was very nice, she explained what she saw and talked about her profession. She said the tumor was a bit frayed at the edges, with a maximum diameter of 2,4 cm (down from approximately 7). She didn’t see much in the armpit, so hopefully that has shrunk as well.
Good news to start the weekend, and now its time to start enjoying the Christmas holidays.

Merry Christmas everyone!

Good news – continued

So yesterday I was tired and broke off my post without finishing it. Tuesday and Wednesday night I had trouble sleeping. Last night, I started to feel a cold coming and today I spent most of the day in bed catching up on sleep.

So the same radiologist – dr. meier – performed the procedure. Because Lianne, the intern, was there, he explained the process to her while he was working. Unfortunately for me (being the subject of the procedure) I couldn’t quite see the big computer screens with the imaging. There is an x-ray machine underneath the table and the images are displayed. This way, the radiologist can see the catheter going through the artery. He first gave me a local anesthetic using a syringe, and like last time it didn’t work right away. He sounded surprised when I said I could feel it, and gave me an extra shot. I said something like some patients are difficult and they thought it was funny.

The procedure went quickly, and this time he knew exactly where the right artery was. He had a number of thin threads that he pushed through the catheter (which is a long transparent thin tube). The chemo went through this as well. When he had finished, it was time to put in the plug. This is the only part that is painful. I turned my head away and winced because of the pain. Dr. Meier talked to me and told me to keep breathing, which I thought was good advice, and then asked me my plans for the weekend. All to keep me from thinking of the pain. Well, I said, I’m going to lie in my bed and sleep. What about the arrival of Sint Nicholas he said, aren’t you going to go see it? I haven’t wanted to do that since I was 6, and our kids are far too old. He said his parents in law were planning on going without children, apparently they liked it. As he talked he finished placing the plug and the pain ceased. He talked as if we were having coffee.

He asked me if I would be coming back but this was the last time. He wished me the best and I went back to my bed and waited for someone to pick me up from the hallway (they carted me around in my hospital bed). I asked Lianne if she could see everything on the screens and she said that it was very interesting. Apparently this is a specialty called intervention radiology. I was impressed with the way Dr. Meier worked, very precise and professional.

Once upstairs I had to pee, but I was not allowed to move so Daphne gave me a bedpan. A little later I got my lunch (vegetarian croquet and broccoli soup) and then I rested for a while. My mom arrived around 4 PM. Just after, the doctor stopped by to see how the wound looked and she told me I could go home at 5. The nurse removed the IV and we packed all my things up. My mom drove me home and I slept in my own bed that night.

Yesterday I felt great. No pain at all, I was able to move and walk around. But then last night I felt I was getting a cold. And because my white blood cell count is low, I’m not taking any chances. So today and tomorrow I’m resting and taking it easy.



Today we went to the AVL hospital in Amsterdam. For a change, we got up early (6.45 AM) and headed out to Amsterdam. The hospital seemed quiet. We dropped my suitcase and blanket off on the 4th floor and went back down to the ground floor. First we went to the lab to have blood taken. A little after 9, dr. Baars came out to meet us. She had gotten the lab results and my platelet levels were too low for the angio procedure. So everything was rescheduled for next Wednesday. Because I had some pain in the side since Sunday, she wanted to check the liver with an echo. The echo could take place this morning.

So a little later, Victor went back up to get my things and I went to radiology for the echo. Victor met our dear friend Mariette in the hallway and they came to the waiting room to meet me. The echo went by fast; the radiologist couldn’t find anything dangerous. He saw there was a lot of gas in my intestines and advised me to drink water frequently. Afterwards we had coffee and tea in Mariette’s office. She works at AVL in the department of radiotherapy where she co-ordinates the flyers, patient folders, website information etc. It was nice to see her!

We left AVL and the sun started to shine. I didn’t feel like going home straight away so we went to a garden center – they had a Christmas show already! – and bought dog food for Flo and a bird feeding house.

Dr. Baars had called while we were shopping and left a message. She had received the liver values and they looked good. So the treatment seems to work! I felt very relieved, especially because I had been worried the pains might be the cancer itself, but they are caused by the chemo. So I’m home now, and will go back to AVL next Wednesday.


Goodbye Sander

Last Saturday, November 3rd, I decided to go visit Sander, who was at his parents’ house, two streets from us. It was raining and the streets were eerily quiet.

Mr. Rietdijk opened the door. When I told him who I was and that I came to visit Sander he was quiet for a moment. Then he spoke. Sander died this morning he said. I immediately cried.

He invited me in. Sander lay in a hospital bed in the living room, a smile on his face and two oil lamps burning softly behind him. Wendy, his wife, gave me a hug, and his mother also. I was very moved. Even though I was sad, we each felt that he had been released from his suffering. There was a lady from the funeral services already there to go through the arrangements. I spoke with Wendy who seemed very natural, and at peace.

When I left I felt a bit empty. Once at home I called Emmy, who was now in a revalidation center and still has trouble walking. She said the same thing, his suffering has ended.

Yesterday we went to the cremation services in Den en Rust, a beautiful area in the woods of Bilthoven. There were so many relatives and friends, that we’ve attended the services outside the theatre. Even though we knew no one there except the family, it was moving to hear how Sander had been before his illness. Sander’s father read a very moving poem by Toon Hermans, Sander and his grandma had shared it often:

Sterven doe je niet ineens
maar af en toe ‘n beetje
en alle beetjes die je stierf
‘t is vreemd, maar die vergeet je
het is je dikwijls zelfs ontgaan
je zegt ik ben wat moe
maar op ‘n keer dan ben je aan
je laatste beetje toe.

(Free translation by Sheila:
you don’t die all at once
but each time a little bit
and every little bit you died
its strange but you forget
often you don’t even see
you say I’m just run down
but one moment will reveal
your last little bit is flown)

Fare thee well Sander. I will remember you.

After the ceremony we gave our condolences to his family. They were very glad that I had come, gave me a big hug and even wanted to comfort me too! They are very loving people. Amazing, how you can feel close to people you have just met. We are all in a similar unwanted situation which brings us closer together.

Second opinion

After I came home from the AVL, I was tired and spent the next few days sleeping, walking a bit and trying to get back some strength. Emmy (my neighbor from room A012 in the hospital) called me on Saturday and told me Sander had had bad news. Sunday morning Victor and I visited Sander in the hospital. He had been told on Friday that there was nothing they could for him. That’s a shock.  On the way out, we saw Wendy, his wife and wished her strength. Also on Sunday, Nancy flew over from London just to see me. She and my mom took the dogs out for a long walk.

On Monday 22nd October, we had an appointment at the VUMC in Amsterdam for the second opinion. The doctor who met us, dr. Westgeest, is a fellow in oncology and explained that he had gone through the dossier and wanted to ask me some questions. He also explained that the second opinion would be that of the team, not just his opinion. He had noticed that the second scan was taken with a different technique from the first, which made it difficult to compare the two.  Also, the liver had changed shape. He could not reach any conclusions based on what he saw, and proposed to do a new scan. But since I’m being treated in the AVL, he suggested to wait with the scan.

He was very interested, and listened well. He asked why we asked for a second opinion. I felt that the last results were somewhat unclear, especially the scan, which two radiologists and my oncologists all interpreted differently. Also, the treatment my oncologist had proposed (Taxol) and the one I was now receiving at AVL (Mytomycine) were quite different. So I want someone independent to review the choices and also to help me make new ones as we progress.

Since I was already being treated by the AVL, dr. Westgeest intended to call them, as well as Tergooi and our GP dr. de Bruin. He checked me physically and also needed blood results. A colleague of his is doing a study on particles in blood which may be used to diagnose or track cancer, and he asked if I would be willing to donate two tubes of blood. I agreed and waited for his colleague, Koen. Unfortunately, the nurses had all gone home for the day. Koen tried to draw the blood himself, but it didn’t work because my veins are so hard. So we agreed to return the next day.

On Tuesday, we went to the lab where Koen met us. I was helped right away by an experienced nurse. She had all the tubes filled in no time at all. That afternoon we went to a store in Bergschenhoek where I’d seen a comfortable couch. I sat on it and was sold. The couch will be delivered on Monday.

Later that day Victor received a voicemail from Dr. Baars from the AVL. She had gotten the blood results from dr. Westgeest and told us that the liver values had improved a bit. This is less than a week from the treatment, so I’m hoping they will improve further.

On Wednesday and Thursday my condition improved, and I started eating solid foods again. We received the good news from our friends Jasper and Alice that their son Arthur was born on Tuesday evening. Alice also has metastasized cancer and needs chemo. On Thursday dr. de Bruin stopped by to tell us she had spoken with dr. Westgeest and was informed of the treatment at the AVL. When we said we were worried about the cancer spreading, she said that the cancer is already in the body, and is unlikely to disappear, so it is a matter of time. She also said that different specialists have different approaches, AVL is focusing on the liver, which is the most urgent. Next Monday we have a second appointment with dr. Westgeest. And on November 14th, I have the second treatment at AVL.

This week I’ve improved a lot. I can take walks of about 20 minutes, I can go to the store, eat solid food again and talk. After three weeks of hardly talking, it’s nice to be able to talk and to eat again. Physically, I feel better every day. In the afternoons I get a bit tired, and then need to lie down for an hour or two. But otherwise I feel ok. It’s just strange that I can only look a month ahead, so making plans is not possible at the moment. But I’m enjoying every day and I try to enjoy the small daily pleasures, the sun shining, a walk, friends and neighbors who stop by. In short, just enjoying life!

Mitomycine-C treatment at the Antoni van Leeuwenhoek Cancer Hospital

Last monday we had an appointment with the oncologist at 11 o’clock in the Antoni van Leeuwenhoek Hospital in Amsterdam. This time Sheila’s niece Ineke came with us to help us in this process. We were told that we would discuss alternative treatments with the oncologist in order to draw up a plan for the next phase.

However, we were very surprised that we were immediately sent to the hospitalization department. No conversation with the oncologist at 11 o’clock, but a nurse came to us to accompany Sheila to a bed in a patients room. Sheila’s name was already printed on the door of the room. Her blood was taken and after an hour the oncologist arrived. ‘Your liver will be treated today with Mitomycin-C by a catheter inserted via the femoral vein into the hepatic artery. We will keep you a for a few days in this hospital’, she started. ‘We discussed this with the oncologist of the Tergooi Hospital, because there is no time to lose’. Of course, we all agreed with this last remark, but Sheila was not prepared to undergo hospitalization at this moment at all. So we went to a small discussion room to be informed about the plan for the next phase that was already drawn up, apparently. This specialist who was clearly experienced,  explained to us the Mitomycin treatment. This treatment is in 60 – 80% of the cases successful and will be applied three times in three month. She agreed that this all came across as a robbery, so we postponed the treatment to next wednesday October 17th. Ineke had to go to work. I drove her home and then immediately returned to Sheila.

Meanwhile an echo and a picture of Sheila’s liver were taken and she was examined by the dental hygienist. Sheila still had trouble talking and swallowing. The conclusions were that her belly had still too much fluid retention as result of a malfunctioning liver and that the Mucosis was healing. It is likely that her belly will be drained and that this treatment will have to be carried out regularly. Sheila was told that her liver is very sick, but the opening to the stomach is open. Her bone marrow produced plenty neutrophils again.

So, today we went for the Mitomycin treatment. Sheila is able to speak now and her belly has become less thick. The ward doctor prepared her and assumed by the way that her belly will probably not need to be drained. She got a plug in her groin. That will keep the risk of unwanted bleeding at distance. Tomorrow she can go home again. Here is her story:

“I was taken to the radiology dept where I had to lie down on a narrow bed. The radiologist explained he would give me a local anesthetic and then insert the catheter through the artery in the right leg, by the groin. It hurt a little because the anesthetic had not taken effect. He gave me some more. A big square box hovered close above me, it was some sort of camera. They followed the catheter on the screens, which I could not see. The first artery was entered. The doctor went into the room to look at the CT scans. After a while he came out and gave the chemo via a small hand pump.

The second artery was a bit more elusive. Apparently it diverged earlier than expected but the radiologist found it and then injected the other half of the chemo into that side of the liver.

It all took just about 1 hour. The radiologist removed the catheter (I couldn’t feel it) and closed the artery with a plug. I felt that a little. I had to stay still for two hours but after that am allowed to move around.

Victor was waiting for me in the hallway. It was nice to see him. We waited for the transport staff to take me back up to my room. Once there, Victor went to have some lunch and I waited for the two hours to be over.
At two pm I could go to the bathroom and put on my underwear again. Victor went home and I read my book and drank two nutridrinks. My throat and mouth are feeling much better.
My friend Mariette from Bussum came by, she works in the radiotherapy dept. She came by before the treatment as well, its nice to have a friend nearby. Since I still can’t talk much, she left again.
At 5.30 pm they brought dinner. I was hungry, from fasting all morning. I had a cup of soup, a small pancake filled with spinach and vla/custard for desert. The first time I’ve had solid food in 3 weeks!

After 6 dr Baars came by to check up on me. Tomorrow they will check the fluid in my stomach for the cause. She asked me how I felt and I feel fine.
She suggested to meet in 4 weeks in her office and then continue with the second treatment. She also asked about my mouth and throat. They feel much better although I still have some trouble talking.”

We have the feeling that Sheila is in good hands. And she is still in control as far as possible.

It feels like we’re driving at top speed along cliffs without guardrails, but Sheila is an excellent driver and her car is well prepared now ….

At home

Yesterday in the hospital I said goodbye to Emmy and to Sander, my roommates. Emmy is also from Eemnes and wanted to keep in touch. She is in her mid-seventies and has an amputated leg with a prothesis. She is a funny lady, talkative and straightforward. But now she has to learn to walk again.

Sander came in two days ago, but he’s one big smile. He is a young guy, maybe 35 or a bit older. But he suffers a great deal. He can hardly walk, and he cannot sit for more than 5 minutes because of the pain in his back. He was going through chemo for metastases in the liver (colon cancer) when something went wrong with the chemo – it was missing the antinausea medication. So he was sick for days, lost 20 kilos, and then he got an extreme pain in his back. He has a young wife and two little children. It was terrible to see someone in so much pain. When I said goodbye, he grabbed my hand and held it tight. He said he knew when he saw me that I would understand. I left both Emmy and Sander a letter with my contactinformation. Sander’s parents live two streets away from us.

Yesterday Victor took me home around 11. I had trouble talking. It was a beautiful day and I was so glad to be out of the hospital. Once we got home, I greeted Flo who hardly seemed to miss me. It’s so nice to be home again. I relaxed on my couch and later we watched two movies.

Last night I slept really well. Today it rained and I didn’t feel like getting out of bed. But once out, I took a nice shower. So much better than the showers in the hospital, which were a bit out of date, and the showerhead is placed close fo the showercurtain so that it clings to you. And its much easier to shower without being attached to an IV. To change clothes, the nurses helped me by pulling all the bags attached to my IV through my shirt sleeves.

Unfortunately my mouth still hurts and is very painful. I still can’t talk or eat. Victor and I went for a walk with Flo. I had forgotten my glasses so Victor went back and found the doctor ringing our bell. She came to me right away and asked about the pain. Since I still have a lot of pain, she prescribed a painkiller.

Victor picked up the Kalium drink from the pharmacy: its either the drink or the pills. The pills are huge and I don’t think I can swallow them. So I went for the drink, I drank 8ml of the liquid, and it felt like I was burning in hell. My throat was on fire. It was extremely painful. And I have to take this 3 times a day.

I have to drink three nutridrinks a day. I finished 2. One to go. My days are filled with taking medication, nutridrinks and doing nothing. Too bad I still can’t talk. Victor went to the pharmacy again to receive the painkillers: Zaldiar and Algix. I hope this will reduce the pain.

On monday we have an appointment at the Antonie van Leeuwenhoek Cancer Center with the specialists to discuss the options. This is really hard, but I am determined to beat this cancer!